Trigeminal Neuralgia , TN, tic douloreaux, is the trigeminal nerve producing  false signals from the brain sending excruciating lightening strikes of facial pain to one side of the face. Compendium

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51

TNA In the News

Gamma-knife radiosurgery: Neurosurgery without  scalpel By Mayo Clinic staff 54 Gamma-knife radiosurgery. The words may sound foreign, and a bit scary, especially when you realize that gamma-knife surgery is performed on the brain. But gamma-knife radiosurgery can be a very effective way to treat brain tumors and other brain abnormalities, particularly those that can't be treated with traditional neurosurgery. The gamma knife isn't actually a knife. Rather, it's a special machine that focuses high-intensity radiation into a small area. The radiation damages and destroys the unhealthy brain tissue. "The gamma knife is a cylindrical array of 201 sources of radiation aimed at one point," says Bruce Pollock, M.D., a neurosurgeon at Mayo Clinic, Rochester, Minn. "The individual radiation of each beam is low, but at the focal point of the gamma knife, a very high dose of radiation can be delivered." This can be particularly useful for brain tumors located in areas of the brain that are hard to reach by means of conventional surgery. In addition to treating previously hard-to-reach areas, gamma-knife radiosurgery has many other benefits. It typically requires only a mild sedative and local anesthesia, is relatively painless and, because no surgical incisions are made, has none of the postoperative complications — such as bleeding or infection — commonly associated with surgery. Signature Card For:                 Brian Nelson    31 Gessner Rd. , Houston, TX  77024 Tel. 713-467-3025 (Refers to my cell)      Fax 713-467-3192         Click here to e-mail me. www.NelsonIdeas.com       Make a difference in the world!  "Idea Possibility Consulting" www.BrianNelsonConsulting.com    There are so many new ways to make more profit.  www.PartyTentCity.com                                  The best modular party tent you can buy! www.IamFightingCancer.com   Brian's story on Cancer and TN.  Post your Cancer story!

58   RxList - The Internet Drug Index Drug treatments for TN - The National Institute of Neurological Disorders and Stroke (NINDS) has written a simple introduction to pain medications. Though applicable to neurological pain syndromes in general, the article contains good specific references to TN medications aswell. See NINDS: New & Old Drugs for Pain. Carbamazepine Brand name: Epitol, Tegretol - Anticonvulsant - Trigeminal Neuralgia Therapy - Antimanic Drug Interaction Database ( This site is not always available ) Leksell Gamma Knife® TECHNOLOGY - Explains the basics of Gamma Knife technology. How it works and what it does. Includes QuickTime® video and press coverage. INDICATIONS TREATED - Contains cumulative treatment data, organized by indication, from Gamma Knife centers around the world. THE PROCEDURE - Provides an overview of the four steps to a Gamma Knife procedure. WORLDWIDE LOCATIONS - A current (as of Jan. 1996) listing of all the locations providing Gamma Knife treatments with links to web sites, where available. PATIENT SUPPORT - Organizations who's mission it is to support and educate patients, with links to web sites where available. BIBLIOGRAPHY - Contains all articles and books published concerning the technology and results of Gamma Knife treatments, organized by indication. Gamma Knife Radiosurgery for trigeminal neuralgia: Results and Expectations University of Pittsburgh Center for Image-Guided Neurosurgery: Our mission is to function as a world leader in the Development, Investigation, and Use of Minimal Access, Minimally Invasive Neurosurgical procedures to enable safer and more effective treatments for patients with brain disorders. Microvascular Decompression of The Cranial Nerves - "Trigeminal neuralgia is first treated medically and Tegretol (carbamazepine) is the most effective medicine. Other medications can be added or used as well and these include Dilantin (phenytoin), Baclofen (lioresal) and Neurontin (gabapentin). However, in many cases medication needs and patients experience either breakthrough pain or undesirable side effects. In this case, operation is considered an option. The microvascular decompression operation offers the best chance of long term relief and the best quality of life of any of the available surgical procedures, and does so by providing relief of the pain without the production of numbness as is necessary with the destructive/ablative procedures. Results: Microvascular decompression has been performed at the University of Pittsburgh Medical Center over the last 25 years in over a thousand patients with trigeminal neuralgia. With careful follow-up it is clear that this operation offers the best chance of good long term cure of pain without the need for medication or any of the alternative surgical procedures. Initially almost everyone experiences relief of discomfort but there is, however, a recurrence rate over time. Even so, the recurrence rate is relatively small and after 20 years of follow-up, 75-80% of the patients are completely free of pain without the need for medication, making this most effective procedure to date." Peter Joseph Jannetta, M.D., D.Sc. Microvascular Decompression - Photographic discription of the operation. Percutaneous Glycerol Rhizotomy ( no information ) Percutaneous Stereotactic Radiofrequency Thermal Rhizotomy - "Percutaneous Stereotactic Differential Radiofrequency Thermal Rhizotomy is a surgical procedure that was developed in the 1960's and has been modified by physicians at the Massachusetts General Hospital for the treatment of trigeminal neuralgia. This procedure creates a precise thermal lesion of the trigeminal nerve which interrupts the transmission of pain signals to the brain, while preserving touch sensations of the face. Radiofrequency Thermal Rhizotomy does produce some mild numbness of the face in the region of the pain, which is usually quite tolerable. It does not effect the nerve function to the muscles of the face, therefore facial paralysis is not a concern." Trigeminal Neuralgia - Facial Pain - Disscussion TN-L: To subscribe, send mail to tn-l@uafsysb.uark.edu with the following command in the text (not the subject) of your message: SUBSCRIBE TN-L (YOUR NAME) The Cleveland Clinic Neurology Forum: Cleveland Clinic - People can post individual, neurology-related questions in this forum. Neurologist's from The Cleveland Clinic will respond to these questions, in lay terminology. This forum gives people direct access to neurologists within a world renowned medical organization! Neurology Web-Forum: MGH Neurology Western Australia - Trigeminal Neuralgia Support Group (Tic Douloureux) I have found information related to TN in the following newsgroups: alt.support.headaches.migraine alt.support.mult-sclerosis misc.health.alternative American Academy of Pain Management   Disability Related Bookmarks   ROOT CANAL TREATMENT: IS THERE A COVER-UP?   Picture of the Trigeminal Nerve.   The Merck Manual is the most widely used medical text in the world.   These books are recommended by the National Institute of Neurological Disorders and Stroke June 1996 National Institutes of Health, Bethesda Maryland 20892 Berkow, R (ed). "The Merck Manual of Diagnosis and Therapy", 15th edition, Merck Sharp and Dohme Research Laboratories, Rahway, NJ, pp. 1434-1435 (1987) Loeser, J. "Cranial Neuralgias" "In The Management of Pain", vol. 1, 2nd edition, Lea & Febiger, Philadelphia, pp. 676-383 (1990) Rowland, L (ed). "Merritt's Textbook of Neurology", 8th edition, Lea & Febiger Co, Philadelphia, pp. 419-412 (1989) Neurotrauma Law Center -Information resource for understanding the legal system's involement in brain and spinal injury cases. Check out the glossary of terms.   HealthPartners Department of Neurology has produced patient educational materials on Trigeminal Neuralgia. This 6 page booklet covers what it is, describes the trigeminal nerve, the symptoms, treatments, some early history back to the 1600's, one woman's personal perspective, and where to go for more information. Author: Bryce D. Dorweiler.   The Treatment of Facial Pain at NYU   Flogoscope -   Acupuncture.com - This report evaluates the effect of meridian acupuncture treatment on trigeminal neuralgia.   East West Wellness Pain Center - Anesthesiology, Acupuncture, Herbs and Homeopathy.   Information Ventures, Inc. provides a full range of scientific information services to professionals in industry, government agencies, academic, and medical institutions. - Use of EMF to Treat Various Diseases. Trigeminal Nerve Neuralgia Treatment with Millimeter Waves.   Leslie's First Aid Kit - Atypical Facial Pain, a syndrome that is somewhat related to Trigeminal Neuralgia.   Health Resource Directory: Trigerninal Neuralgia - Frequently Asked Questions About Neurological Problems.

As a TN sufferer I know first hand of the lack of real knowledge there is within the medical professions but there are members of the profession who do know what it is about and just how excrutiatingly painful it is.They need all the help and feedback they can get. To that end therefore I urge all TN sufferers to join the TN ASSN-USA and the TN ASS UK.,and other national associations.In these associations we can help one another and bring pressure to bear on the pharmacy industry and National Drug Agencies to invest in research and find answers to the many questions that TN gives rise to. Remember as one person you are weak and alone but together we can help one another and become a stronger voice. I am not trying to make political points merely trying to get things moving.I am also a diabetic and I feel TN is a bit like diabetes was a century ago and now reseach is leaping ahead in that disease.Cause, medication, surgery and let's hope one day a real cure. My prayers and best wishes to you all
SID SEABROOK <eco11588@aol.com>
LONDON, UK - Saturday, June 16, 2001 at 13:58:04 (PDT)

I'm a 43 year old female, diagnosed with TN by my dentist 3 days ago. He has seen three cases in his career...I'm number 4. Thank god I was spared the trip down root canel lane. I have had shooting pains from my lower eye lashes to my upper teeth on the right side for a week. Touch, talking and water under the shower would 'set it off'. Yesterday I had my first real shock that reverberated back and forth for what seemed eternity. This is the most bizarre disorder. I am encouraged that there are others out there, but can't believe what I am reading; I am terrified. My family doctor accepted my Dentist's opinion, ordered a brain MRI, and prescribed Tegratal. My next visit to the Doc will include me demanding to be referred to a neuologist who has treated more than a handful of cases. I have a high pressure, high perfromance career which I love. I refuse to become a drug zombie...I just hope I get guidance to assess the 'permanent' options.
Tedi Wells <tmwells@us.ibm.com>
Roseville, CA USA - Friday, June 15, 2001 at 20:51:56 (PDT)

Last night did it for me. Was up all night with the most hurrific pain I ever felt in my 59 year. Could not understand what was going on inside my body that would create soooooo much pain that would last soooo long. The pain would not allow me to sleep, sit, stand or do anything. I didn't know this at the time, but do now, about the base of the brain and the back of your neck. I got a split seconds relief by rubbing in circular motion at the base of the neck. Bottom line is....could not take this kind of pain anymore so went to the doctor this afternoon and he diagnosed my condition as Trigeminal Neuralgia. The doctor prescribed 100mg Tegretol 3x a day to start (dosage changes over next 3 days) and Norco 10mg every 4-6 hours for pain. I do not cherish the thought of having to look forward to this type of pain at any given moment. Interesting thought though as what might have triggered the actual onsett.....I did have cateracts removed from both eyes last Novemeber and continue taking drops for my glucoma every night. Could one or both be the reason....? Or could it be because I once had severe oral surgery??? I seriously worry about the future and what TN has in store for this body. Today is today, tomorrow is a treasure.. Thanks for listening.
julie <thebossisgone@mylycos.com>
USA - Friday, June 15, 2001 at 20:48:00 (PDT)

To all of you who are still suffering; There is hope, and there are knowledgable doctors. Don't give up! I am a 39 year old mother of 3 who had successful MVD surgery 2 years ago for TN and haven't had any pain since. Thanks to all of the new TN webpages and the TN Handbook, it is now reasonably easy to obtain information on this horribly painful disease. However, there is a conspicuous absense of information relating to the psychological affects this condition can have on a patient. The best and most thorough piece of literature that I have found has been in a book called "Why We Hurt" by Frank Vertosick Jr. He is a neurosurgeon who suffered for 20 yrs with severe migraines and has treated many TN patients himself. Most neurologists only deal with the physical aspect (pain) of this disease. But that is only half of it. The pain itself almost takes on a life form of its own and it is always there, waiting to attack. You begin to live your life anticipating pain attacks, and this can be about as bad as the pain itself. He devotes an entire chapter just to TN pain and he specifically discusses (in depth) the psychological terror that TN brings with it. I urge all of you and those who support you to read this chapter on TN. It probably won't help your pain, but at least you won't think you're going crazy!
kay <bjames6492@aol.com>
preston, wa USA - Thursday, June 14, 2001 at 17:44:39 (PDT)

My mother has recently undergone Radiotherapy for cancer of the Thorax. Since she came out of hospital she has been having intense headaches and was diagnosed with neuralgia. She is also very nauseous all the time. I wondered if anyone has had a similar experience or could advise whether she should be seeking more advice?
Alison Taborda <ataborda@amadeus.net>
London, USA - Thursday, June 14, 2001 at 04:08:26 (PDT)

My mother has recently undergone Radiotherapy for cancer of the Thorax. Since she came out of hospital she has been having intense headaches and was diagnosed with neuralgia. She is also very nauseous all the time. I wondered if anyone has had a similar experience or could advise whether she should be seeking more advice?
Alison Taborda <ataborda@amadeus.net>
London, USA - Thursday, June 14, 2001 at 04:08:19 (PDT)

Dear Judy from Montana: I hope your TN pain stays within a tolerable level for you. Reading your entry caused me to have deja vu many times. The teeth extractions....the migraines, the weather, (I thought I had some kind of gift to predict the weather....lol) I too had migraines on the same side as the TN. I could never get a doctor to make the connection, however, I had an MVD over a year ago...and in addition to the TN being resolved, I have not had a migraine since. I just had the last of my upper teeth pulled at age 46. Not many left after the extractions done prior to a correct diagnosis of TN a couple of years ago, and I was breaking the ones I had left. I think it is fairly common for TN sufferers to have an aversion to the dentist! I am happily without pain, and off the medications for a year now. My sincere hope for everyone that suffers, is to find their own answer to stop the suffering. God Bless
Carole <divelpn@aol.com>
South Fork, CO USA - Wednesday, June 13, 2001 at 03:56:23 (PDT)

Dear Judy from Montana: I hope your TN pain stays within a tolerable level for you. Reading your entry caused me to have deja vu many times. The teeth extractions....the migraines, the weather, (I thought I had some kind of gift to predict the weather....lol) I too had migraines on the same side as the TN. I could never get a doctor to make the connection, however, I had an MVD over a year ago...and in addition to the TN being resolved, I have not had a migraine since. I just had the last of my upper teeth pulled at age 46. Not many left after the extractions done prior to a correct diagnosis of TN a couple of years ago, and I was breaking the ones I had left. I think it is fairly common for TN sufferers to have an aversion to the dentist! I am happily without pain, and off the medications for a year now. My sincere hope for everyone that suffers, is to find their own answer to stop the suffering. God Bless
Carole <divelpn@aol.com>
South Fork, CO USA - Wednesday, June 13, 2001 at 03:55:26 (PDT)

Have had TN for 4 years. Had 2 root canals, 2 teeth pulled and had dentist think I was a drug addict for a couple of pain pills he prescribed!! My sister is the one that went out on the internet and figured out what I had before I went to my doctor. He agreed with her findings. For 2 years I was in pain. Tried the Neurontin and Tegretol. They made me feel so sick and out of it I told the Doctor I just couldn't do it anymore. He tried me on baclofen and it never worked. Then, I hurt my back and while I was taking Soma's (a muscle relaxant) my TN went away. I never put the two together until my back got better (it was bad for months) and I quit the Soma's. Right away the TN came back. I told my doctor, who is very understanding, that I thought it was the Soma's that had caused my mouth to quit hurting. Sure enough, once I started the Soma's again, the TN pain went away. That was about 2 years ago. Recently, I started to have break through pain. Not a bunch, but enough to get my attention. Hopefully, this is as bad as it will be. Unfortunately, I also have migraines. I have now started to suspect that it is possible they could be (or at least some of them) related to the TN. My sister has also got TN, so have realized that this is something that runs in our family. All of my sisters have migraines besides, although the sister that has TN and I seem to run the same migraine pattern and we live over 300 miles from each other. I do feel that my TN gets worse with the barometric pressure. Anytime a storm is coming or if it's going to rain or snow, my mouth can predict it. Anyway, just thought I would let people know that I have found some relief with the medicine "Soma" that I take. Hope it will help someone else. Unfortunately, I do not have internet access. I am using my libraries computer.
Judy <do not have one>
MT USA - Tuesday, June 12, 2001 at 17:02:07 (PDT)

Hi! my name is Judy, still having a problem it will be 3 years in Jan. last night my eyebrow kept moving, everything happens to me in my sleep, also electric shock in face near lip, anyone else have this, could it be possible that i have tn and hemi facial problem (facial tics) does not run in my family and the Doctors keep saying not to do an operation, Any advise. Regards, judy judyj519@aol.com
Judy JUliano <judyj519@aol.comTarpon Springs>
Tarpon Springs, fl USA - Thursday, June 07, 2001 at 16:16:55 (PDT)

Hi everyone. I am 42 years old and have been suffering with TN for 2 years now. I am currently taking Tegretol 900mg, Neurontin 900mg, and Baclofen 30mg, per day. I'm just wondering in the scheme of things, does this seem like a high dose of medicines? I have read where some people take more, and some less. I am having terrible pain again, so I guess it's time to consider other options. I would like to here from people that have had surgery for TN, any kind, so I can take the time to think about my next move. For me, it seems as though the TN becomes active every couple of months and then the doctor increases my medicine until it gets under control, but this time he doesn't want to increase it any. He said we could increase the Neurontin, but he wants to wait a bit. Ouch!!! I don't agree with him. I need to bring this under control. Any information would really be appreciated. Thanks in advance. Joyce
Joyce <jupjkaem@yahoo.com>
Prince Frederick, MD USA - Wednesday, June 06, 2001 at 10:08:18 (PDT)

Hi everyone. I have made several comments in this guest book over the last couple years and made some really wonderful friends. It is so nice to talk to others who understand. I'm 35 and have had TN for 15+ years, seen many many Drs, tried many many treatments. Finally July 2000 I had MVD then again in Oct. The MVD in Oct was to cut the nerve(If you have read any of my previous comments you know I DO NOT recommend this). This last MVD created a whole new set of problems, also alot of pain has returned. I think that is because they cut the nerve to high. HERE IS MY NEW PROBLEM: After the most recent TN attack (August 1999) I felt drowizie all the time. I thought it was the meds (oxycontin)so I never really complained about it. until a couple of months ago. I was at work and fell asleep at my desk and my head hit the computer screen(that will really wake you up fast) I talked to my DR and he had me do a sleep study and a test for narcalepsy. Well I now have narcalepsy and sleep apnea. I'm wondering if anyone else has the same problem and if there may be any connection. Feel free to e-mail me. If I don't get back to you right away, its because on top of everything else they want to remove my gall bladder. That has given me problems over the last 2 months. I'm wondering if that could be connected with all the meds I'm on? The pacific north west has put together a support group that will meet june 23 in tualatin oregon. I hope to see alot of you there.
Jan <jan.zook@grandronde.org>
Willimina, OR USA - Tuesday, June 05, 2001 at 09:17:28 (PDT)

I first wrote back in December, just a few weeks after I had the mvd operation. since then the left side of my face hasn't hurt, but i wrote in the article that I was experiencing deafness and dizziness. Just in case anyone is suffering from that now you should know that I had a lot of arteries on the trigeminal nerve and one that accidentally got cut led to my inner ear, effectively destroying it. Three weeks ago I had to have a labyrinthectomy to cure the problem. Basically everything inside my ear was removed and now the right side of my brain has to learn to take over for the entire body. If you've had an mvd and are still sick and throwing up and dizzy, go to an ear specialist and have it checked out. I'm still glad I had the mvd. It helped sooooo much.Sometimes I brush my teeth and wash my face just because I can now. And it's wonderful to be able to eat something besides oatmeal and grits. That got old in a hurry. For those of you who are still suffering with the horrible pain, especially in the middle of the night when no one else is awake and you're about hysterical from pain, remember that you are not the only person in the world awake and suffering right then. A whole lot of people are going through the same thing and it's not something you're "imagining."
Susan <annainga@aol.com>
OK USA - Friday, June 01, 2001 at 20:01:06 (PDT)

I want to say thank you to Shari from Ely, MN. I read your comments and asked my doctor about trying Trileptal. I am almost feeling normal again. I still have some breakthrough pain but this is the best I have felt since I don't know when. Bless you. Thank you for sharing this wonderful information.
Cathy Lawing
Mansfield, TX USA - Friday, June 01, 2001 at 14:36:07 (PDT)

I was recently diagnosed with TN after years of Dr. visits, trips to the specialist, sinus treatment, and many nights at the ER trying to figure out what was going on. One night I went to the ER in so much pain I would have shot myself if I had a gun to do so. The doctor there told me I might possibly have a tumor, but he did nothing to treat me except give me a shot of Demerol. I returned to the ER 2 hours later only to be given another shot. On my 3rd visit that night, they did a CAT scan and turned up nothing. After several months of these intense "attacks" my Dr. sent me to a neurologist. It still took many visits before the Physicians Assistant finally diagnosed me. I've had x-rays, CAT scans, sinus surgeries, and eventually had been told I was imagining things. Thanks to this PA, someone now recognizes my problem as real. It's a horrible thing to try to live threw each day with this pain. Carbamezaphine had been working good, but my Dr. recently took me off of it due to the risk of liver problems. I write to you now in hopes of some help. I am only 31 years old and hope there's an alternative to this madness!!!Please feel free to email me with any questions or information you may have. Here's to being pain free.
Colleen Richter <crr6of7@aol.com>
Federal Way, WA USA - Wednesday, May 30, 2001 at 22:27:33 (PDT)

Hello, I am a sufferer of TN. I read a book on "Chinese System of Food Cures - Prevention & Remedies by Dr. Henry C.Lu" He wrote that Peppermint can cure TN and he have a personal experience in this respect. About 10 years ago, he developed TN which was very painful and he had used peppermint for instant relief of pain. It was more effective than any pain killer. But treatment of TN must be based upon each person's physical constitution. Recipe: Boil 5 g fresh peppermint in 1 cup water and add a little salt. Drink it like tea to relieve all kinds of pain involving the head and neck, such as headache, sore throat, pain in the mouth, pain in the tongue, toothache, and also nose bleed, preferably at the early stage. Dr. Henry C Lu received his Ph.D degree from University of Alberta, Edmonton, Canada. Dr. Lu is now also patron of Brisbane College of Traditional Acupuncture and Oriental Medicine in Queensland, Australia and an honorary professor of the Academy of Science for Traditional Chinese Medicine in Victoria, British columbia, Canada. He lives in Surrey, British Columbia. Is there anyone out there who can locate Dr. Lu in Surrey and find out more from him about the peppermint treatment for TN.
Katherine <katkim@time.net.my>
Kuala Lumpur, Malaysia - Saturday, May 26, 2001 at 11:31:45 (PDT)

As a Registered Nurse you would think I would have some experience with chronic pain. I had no idea anything could hurt this much. I have been very fortunate - My dentist diagnosed me with TN and then sent me off to the merryground of my local HMO. After convincing my PCP I was not looking for narcotics I finally got a referal to a neurologist - lo and behold - she also has TN. I am just beginning the journey through the medical management and have started on neurontin - so far so good - I have had a bit of relief and can only hope for more improvement as we fine tune the dosages. The stories I have read are scary. I hope this is a temporary glich in the road of life and not a permanent detour!!!!!
Judy <Baandaid@aol.com>
Melbourne, FL USA - Tuesday, May 22, 2001 at 20:46:22 (PDT)

I think you may have heard of the desease Myasthenia Gravis, it is a cousin desease desease to MS. My boyfriend has ben diagnosed with this disease. He thinks he is wonder man and he is in my eyes. I love him deerly and he keeps all symptoms, works hard and I cannot tell if he is not feeling well because he will push himself to the limit everyday to mprove to himself and to the rest of the world that he is not ill. Please help me to understand, I love him dearly and I don't want him to work himself into the grave to prove that he is not ill or that he can be ill and still be superman.
Mike Scarvelli <Mike2day10>
Vermilion, oh USA - Tuesday, May 22, 2001 at 20:14:37 (PDT)

Hello everyone. I posted a message back in March. (I think.) Anyway, I have had a lot of helpful conversation. Thanks. I have had TN for 14 years. I have been on and off meds. Currently, I am trying to go off my 1200 mg. of Trileptal to pursue pregnancy. (Even though on the meds I still have much pain.) So I am trying some herbal, and homeopathic remedies. I have also started taking B-12 injections. I have only had these for a few days. I am a little nervous about side effects. Has anyone had any experience with B-12 injections? If so please write and let me know. I think they may be slightly helping, but the other "natural" remedies have not yet been of use.
Melina <d.hall49@verizon.net>
Richland, Wa USA - Monday, May 21, 2001 at 21:54:17 (PDT)

I have suffered with TN for over 15 years. I was officially diagnosed in May of 2000 after having my first child. It started out as twinges and was very aggrevating. As time passed, it became more and more painful. I suffered the most when I bacame pregnant. I suffered my entire pregnancy and decided I had to find out what was causing this excruciating pain. I am convinced that the hormonal changes in my body was causing this pain. I went to an Ear, Nose, and Throat Doctor without success. He suggested a Neurologist. After meeting with my current Doctor, he immediately called TN by name. I was relieved to know that there was a name for what I had. I was given Tegretol (did not work). I was given Carbemazepine. It worked but I was TIRED, INCOHERENT, and it could cause liver damage. I wanted a permanent fix for this condition. I had the Gamma Knife procedure done in January 2001. After six weeks I felt like I was cured (so I thought). The doctor told me it might not be permanent. I had to take antibiotics to prevent an infection for another ailmemt and WHAMMMM!! it came back after three months of FREEDOM. Although the Gamma Knife procedure was a little painful, it is WORTH the time I had pain free. I am going to talk to my doctor about any other procedures or medications that will cure or control me of this MONSTER. Feel free to email me. Keep hope ALIVE!!!!!!!!
Glenda <itsme_geegee@yahoo.com>
Charlotte, , NC USA - Sunday, May 20, 2001 at 10:57:11 (PDT)

Just an addition to last nights entry. I highly recommend the Michigan Head Pain & Neurological Institue: 3120 Professional Drive- Ann Arbor Michigan 48104. (734) 677-6000. I received more information & more comprehensive testing in one day there than i received in 6 months with a local neurologist. Not only do you learn more of your disorders but also how to manage the pain. Thanks for the e-mails I have already received. God Bless & take care.
Stephanie <slmaybe@yahoo.com>
IN USA - Sunday, May 20, 2001 at 10:03:40 (PDT)

Hello. I was diognoses with TN 3 1/2 years ago. My doctors believe that I contracted this from a virus. What a strange disorder this is. On bad days the pain is so numbing that I cant hardly function. On good days, I wonder if I'm just losing my mind. I have been using bio-feed back for the last two years and this has helped considerably. I had a severe reaction to Tegretol two years ago & ended up in the ER with anaphalactic shock which almost took my life. But if there is life, there is hope. I had the worst attack this week than I have had in several months. Most of the time I take it one day at a time but during an attack I take it one minute at a time. God bless all of you that suffer with this. You are not alone although it definately feels like it. Feel free to e-mail me @ slmaybe@yahoo.com.
Stephanie <slmaybe@yahoo.com>
IN USA - Saturday, May 19, 2001 at 22:07:38 (PDT)

hello everyone, my mother suffers from TN, back in march I posted a comment and recieved input from other readers, that was helpful in 2 ways 1, in learning more of TN and 2. giving my mother hope. she really never looked at a computer before but when she read some of the comments posted by others in this wonderful website it brought her up to new level of hope. She is still in some pain but it doesn't compare to what she was experiencing thanks to her new doctor from NYU hospital. And now is more dertermin to beat this horrible pain. If anyone from NYU hosp reads this I also want to thank your hospital and your staff. THANK YOU ALL
fernando
nyc, ny USA - Friday, May 18, 2001 at 22:22:49 (PDT)

Hello everyone, Just wanted to update you and let you know that all of you are in my prayers. I hate this awful, awful thing. What do you call it? A condition, A disease? I had a really bad day yesterday, doing a little better today. I had a Healthy Healing book, (alternative medicine). I have begun using some of the things they had listed in there for neuralgia. I believe it is actually helping. I still take my neurotin and pain meds, but have had less really bad days. I am hopeful that once I get myself acculmated to a new regemine that I will get better. If you haven't tried any of the herbs and vitamins, it may be worth checking into. Forgive my spelling, my brain doesn't seem to work like it used to. I do however, feel more alert since taking the herbal meds, plus the vitamins. Thank you so much for this web site. No one can understand this except those of us who have it. Sharing seems to be most helpful.
Cathy Lawing
Mansfield, Tx USA - Thursday, May 17, 2001 at 10:50:32 (PDT)

I was diagnosed late October, 2000 with TN after going through the same regime of dentists, ENT's, family practioner, and neurologist like many of you have. I have had wonderful results on the drug Trileptal 300 mg 3 times a day. We tried Neurontin first which made me a zombie and then Tegretol which made me so sleepy I could hardly function. Trileptal not only takes away the pain but also the severe pressure that I was experiencing when I was on Tegretol. I have a slight numbness in my right cheek but I feel almost back to normal. Here are some things that I have found out regarding TN. It is a hyper-excitability of the trigeminal nerve. This is caused by injury to the myelin sheath that insulates the nerve fibers. When the myelin sheath is injured, electrical impulses are either activated, short circuited or reverberate, resulting in increased electrial traffic in the nerve. The cause of the myelin injury can be compression by a tumor, aneurysm, vascular malformation or other vessels. Other causes include ms, toxins and possible viral infecitons. The trigeminal nerve exits the brain in the pons area. In my case, they have found a tumor in that area. I am on my way to the Mayo Clinic in Rochester in June. The Mayo Clinic web site has some great information on it also - MayoClinic.com - Trigeminal neuralgia: Pain in the face. Wish me luck and pray for me as I will pray for everyone out there who is suffering from this the most painful pain a human being has to suffer with. I highly recommend Trileptal, it has changed my life!
Shari <jbssaw@rangenet.com>
Ely, MN USA - Sunday, May 13, 2001 at 19:06:45 (PDT)

I was just reading some of your entries. It takes me back to about 8 months ago. I too have TN and Post Herpetic Neuralgia. I am one of the luck ones I found a fantastic doctor in Toledo OH. In Sept. of last year I had a surgery call motor cortex stimulation. It is electrodes on the gray matter of brain and a stimulator inserted in upper shoulder. This can be adjusted to help pain. The doctor sets parimeters so that you can't go to high. I have a least a 50% decrease in pain. I still have a few sharp pains now and then but nothing I can't live with. My speech was greatly impaired before, the pain in my tongue was so severe I didn't want to even talk. At the present time I am off of all the terrible meds. I still have problems with my memory and can not be under any stress. I am now on SS. I would love to help anyone out there who would like to e-mail me and find out more about my surgery. Just maybe it could help you too. Coral
Coral <MECJB@aol>
Erie, PA USA - Friday, May 11, 2001 at 18:05:42 (PDT)

I was referred to go to a new doctor a facial surgeon for an evaluation. I just want to know it anyone out there has ever had any other tests done to diagnose TN other than the MRI blood work and the neuro exam. I was told something about having a EMG, where they put small needles in your face and then givve small electric shocks. This sounds horrilbe considering that I get electric shock jolts to my face and teeth. I cant imagine having that done. Can you please let me know if anyone has had any of these tests done besides the mri. thank you
Lisa <LisaE0608@aol.com>
USA - Friday, May 11, 2001 at 17:40:59 (PDT)

Hello, I was just diagnosed today and went on line to get some info. I can tell you that a bullet from a 38 would have felt like relief for the last several days. My rt ear and all of my teeth on that side are affected. My beloved dentist was preparing to remove all of my upper crowns and just go exploring. The physician I went to acted like he immediately knew what was wrong from my description. The pain has been unlike anything I have ever experienced before. I don't understand how I developed this and will I have this forever? I consider mtself lucky based on the letters I have read thus far.
Melinda Staten <Melstaten>
Louisville, KY USA - Friday, May 11, 2001 at 17:32:38 (PDT)

I sympathize with everyone. I'm 31. Iv'e had TN for 3 years. I've been maxed out on Nuerotin & Tegretol off & on. I did the Gamma Knife in January. It only lasted 2 weeks before I had pain again. My doctor wants me to have the MVD now. I haven't made the decision yet but thats probably what I'm going for. Wish me luck! God bless you all. For everyone asking about working on these drugs. It's very hard for me I take it one day at a time and do what I can.
Lisa Ladewig
Smithville, TX USA - Wednesday, May 09, 2001 at 12:12:17 (PDT)

Dear Lisa and Cathy, I am so sorry for the awful times you have both had. I can sympathize with both of you. The horrible side effects of the medicine, when it works....and the hopelessness of the doctors you seek for help. My solution may sound simple and yet scary, but it worked for me. I had an MVD one year ago. I have been pain free and medication free since that time. There are many fine neurosurgeons who for whatever reason are understanding and helpful. Unlike so many I met, there are a few who will listen and offer guidance. Please don't give up. Keep looking. Contact the Trigeminal Neuralgia Association for their list of the consulting medical board. Major surgery is a huge decision, but I wanted my life back, and so far, I have it back. I believe I appreciate it more now, as I know what hell feels like. My heart truly hurts for everyone that continues to suffer. Please feel free to email me if I can help. God Bless Us All
Carole <divelpn@aol.com>
South Fork, CO USA - Tuesday, May 08, 2001 at 22:33:04 (PDT)

Well I am not sure what is going on but I have been having the worst pain, It just seems to be horrible over the past 2 weeks and no matter what i do, it does not go away. I have increased my tegretol despite the fact that it affects my vision, but i dont think that i have much of a choice in a matter. So now I am back to being forgetful and at a loss fo words, and just trying to stay awake is a task. The people that i have talked to with TN have said the same thing that they have been suffering horrilby too but not sure why. Has anyone found anything out there that has helped 100%, if so please let me know, enough is enough. Lisa
Lisa <lisae0608@aol.com>
phila, pa usa - Tuesday, May 08, 2001 at 15:05:35 (PDT)

Hi everyone. It's been awhile. I am having a really bad day. I have given up hope on doctors. Don't really know what to do. I have only had this for about 8 months, but have very few days of any kind of relief. How, please tell me how to cope. I have the handbook, and have tried just about everything in there. Help! Please.
Cathy Lawing
Mansfield, TX USA - Tuesday, May 08, 2001 at 10:57:01 (PDT)

Just found your guestbook. I have been reading. So many people with so much pain. I have had TN for 6 years. When I first had it I couldn't find out what it was. I had a HMO Dr. that didn't want to send me to a neroligest or nerosurgeon. In time and a lot of drugs later I had MVD about 2 months ago. I have had some slight preasure pains since when I get off the tegretol. Is this normal after surgery? Dr. says give it some time. I am 67 and would really likee some pain free years.Let me share something with you I found in a book I was reading for genealogy. Date March 22, 1857 "I was taken sick the first day of Feb. with the Neuralgia of the nerves or painful aflection of the head and face. I was confined to my room two weeks. I suffered severely." We are not the first. Evelyn
Evelyn <goodygrn@flash.net>
USA - Saturday, May 05, 2001 at 18:36:51 (PDT)

I have had TN for almost 6 years. I have had two MVD surgeries, but still no relief. I am considering gamma knife. I would be interested in hearing from anyone who has had gamma knife in the last 6 months and how you are doing. The gamma knife almost sounds too good to be true. I look forward to hearing from you.
Anne Harrold <anneharrold@aol.com>
Salem, OR USA - Saturday, May 05, 2001 at 13:02:59 (PDT)

hi..have just come across this site...there doesnt seem to be much info on tn in the uk..so i was so pleased to find this one. I have suffered with tn for 5 years now and was in remission until yesterday when the lightening bolt hit me again and again...am now back on tegatol. My pain is in my right quater of my bottom teeth. I am awaiting an appointment with a neurosurgeon..since last sept....very slow here. It is so nice to know that i am not alone with this awfull thing although i do feel for all of you suffering out there....my advice is..TAKE ONE DAY AT A TIME.
marie <thumberlina63@aol.com>
england - Saturday, May 05, 2001 at 07:50:49 (PDT)

Hi Everybody, I thought I would stop back by and update since my last post 5 weeks ago. The Gamma Knife my husband had back in Dec doens't seem to be doing much good. There are times when a numbing sensation takes the place of the pain which is suppose to happen after this procedure but over all the pain has not subsided. In fact over the last 4 days he has been in intense pain. There has been a lot of stress, we are moving and some other things happening so this might be adding to the intensity. If anyone else has had gamma knife please write me and tell me the details and how you are doing. Also, I have brought this up before but has anyone considered using marijuana for pain detraction??? We got a little from a friend and my husband said it helped 'seperate" him from the pain. He said it wasn't a foggy feeling like the tegretol causes. But we are too afraid to get pot regularly. I was reading today that they have cannibis co-ops in San Fracisco and it is legal if your DR. gives you the ok for it. Anyone have any ideas on this??? Blessings to all of you, Scarlette
Scarlette <Artseaone@aol.com>
USA - Saturday, April 28, 2001 at 22:33:30 (PDT)

Hello my friends. Today I have some insight from my gifted doctor at UCLA medical center, Dr. Merrill at the oral-facial pain clinic. (310-794-9723) Those of you concerned with stress and pain, listen up. Pain is stressful, there is no doubt about it, HOWEVER, the more you stress the more it hurts. Study on Lab rats done a couple of years ago by one of his colleagues at UCLA. Rats were injected with cancer cells. One group of rats were incubated in the lap of luxury, wheel, music not too hot never scared. Second group was treated the same but once a day they were thrown in a tank of water to swim frantically for an hour without a way out. The test went on for I don't know how long but at some point they tested the rats level of bad cells. Those who swam had almost two-fold the amount of cancer cells (growth) than those who relaxed all day. That is something to think about - try and relax - although most people do not know how it is to feel so much pain, constant, lets try breathing deep and happy thoughts I guess. I am smoking more, those deep breaths seem to sooth the stress, it's sad and no excuse. Keep up the self love people.
Natalie <multitacitmedia@yahoo.com>
Corona, CA USA - Saturday, April 28, 2001 at 01:13:30 (PDT)

After 20 years of suffering, today I learned what I have and what can be done about it.
Tom MacDonald <tmacdaddy24@aol.com>
Dayton, Oh USA - Thursday, April 26, 2001 at 21:15:04 (PDT)

I was wondering if anyone has heard about the Center for Cranial Nerve Disorders and Microvascular Surgery place in Pittsburgh. Has anyone gone there? I am thinking about having a MVD done and they do the endoscopic MVD. Please e-mail me if you have any thoughts or comments on this place, good or bad. Thanks
kay currier <kay3031>
Fargo, ND USA - Tuesday, April 24, 2001 at 18:42:16 (PDT)

Like most of you, I read vigorously through these messages when I found this page - a sign of relief and terror at the same time - how I wish we weren't so many so horribly afflicted. I had gone to 2 1/2 years worth of doctors until I was diagnosed a couple of months ago with TN. There is a huge ignorance in the medical community about this condition - not even ENT (ear, nose and throat docs) knew what this could be. I am 27 and feel like many of you my life crumbles at its very edges nearly everyday. I think it is important to address the emotional factors that come out of having such a tragedy. The pain is only a part of the suffering, but the normal appearance and behavior we must exhibit daily is eating away at us, too. Even those who listen carefully to our qualms cannot know how bad we have it. Therefore people it is important to have each other. I know no one yet in this 'secret' community - but hope you all feel free to contact me. Today I am strong because together WE ARE STONG. May God Bless You All.
natalie <multitacitmedia@yahoo.com>
Corona, CA USA - Tuesday, April 24, 2001 at 00:19:21 (PDT)

Ref: My comments below. After doing some research with some of the TN medications I have found that some of side effects were similar to methyl alcohol poisoning. The symtoms are like being in a cloud and dissiness and sort of like walking on pillows.
Austin
Houston, TX USA - Sunday, April 22, 2001 at 13:12:32 (PDT)

I have had trigeminal neu. fo about 3 years now, It sort of went away for about 9 mons. but came back with a vengence. I was on a pain study for 1 year which didn.t really help, i couldn;t take the med. because of the kind of word i do, drive school bus. so i stopped the med. it eased up than but tis back, im going crazy with the pain now and im thinking of having the operation which scares me bad.
Pat Daugherty <pjdd7@aol.com>
Altoona, Pa. USA - Saturday, April 21, 2001 at 13:40:51 (PDT)

Miracle! My wife suffered for 6 months with a pain in her right jaw that was suspected to be NT. Even after going to 12 doctors (of all sorts)she could not find relief. One Friday night (a month ago) we had a friend drop in that had some homemade plum brandy (from friends in Europe). My wife binged on it (4 or 5 shots) unbeknown to any of us at the time. The next morning when she woke up, the pain was gone. However, she had a bad hangover and symptoms of sever methyl alcohol (wood) poisoning. I knew this because I had the same symptoms as a younger man when I drank some bad moonshine. Don't try this... methyl alcohol will kill you. But inquire with your dentist or doctor about this phenomenon.
Austin
Houston, TX USA - Saturday, April 21, 2001 at 07:44:48 (PDT)

Wow, I had never heard of Trigeminal Neuralgia until last week when I was diagnosed with it. I went to the dentist, swearing up and down that I had NO LESS than 3 abcess teeth. Heck, I don't even have a cavity! My dentist figured I had TN, and suggested I visit my doctor, who in turn also said I had TN. I have an appointment with a neurologist next week. I've never been so scared in all my life or in such pain. So far the Tegretol isn't working very well, so I'm still on Darvon for the pain. Talk about a walking zombie! I'm so scared that this will affect my job and that I'll lose it. I really appreciate this website. It has helped me a lot, and yes, I agree, more people out there need to know about this. God bless us all!
Terri <mowderek@aol.com>
Duluth, MN USA - Saturday, April 21, 2001 at 06:30:11 (PDT)

Dear friends... Well, after I completely wore out my welcome in my neurologist and general practicioners office from none of my medications completely making this horrific pain go away, I finally got in to see my new neurosurgeon. He explained all of my options (as in the book "Striking Back") and then recommended the microvascular decompression as my best option. My neurosurgeon is here in my area but trained under Janetta for 7 years. I am unbelievably scared of brain surgery but I am more afraid of the pains in my head. I'm not very good at asking for help but if you have had this proceedure - please send me your absolutely candid information. I want my life back and I want you to have yours too. My surgery isn't scheduled until June and I could chicken out between now and then but I am almost positive (95%) that I will go through with it. It has been better recently with good days that make me think "what am I thinking" then there are bad days when I think "how soon can they crack my coconut?"... Anyways, please share with me your experiences with the fear, the surgery and the recovery... Thank you so much and I will pray that each and every one of you find your answer. Jeanne
Jeanne <JVHyde@aol.com>
Sherwood, AR USA - Friday, April 20, 2001 at 14:13:34 (PDT)

Mary Ann, your blood pressure theory sounds about as good as any other I've heard to explain TN. Trouble is, I have low blood pressure and TN. Seizure meds help me. Also helpful is amending hormone fluctuations (including those caused by stress and anxiety). There must be a thousand reasons why TN is triggered. Look at how different we all are, how differently meds and procedures affect us. I don't think there's a simple answer, unfortunately. I'm just glad your blood pressure is being regulated and that you've found TN relief. Whatever it takes is what it takes. It's discouraging when I try some treatment that works for others but not for me. Then again, just because someone has had a disappointing result, doesn't mean that it can't work for me. I guess that sounds like the old "cup half full vs. cup half empty" philosophy. I work hard to see the "half full" side of things so my TN is easier to cope with. But sometimes I can't resist feeling like my cup's dry. That's when my family and friends and TN contacts on this sight fill me up with hope.
Mary
USA - Thursday, April 19, 2001 at 22:56:50 (PDT)

i am 47 years old female tn supperer. i have had this desease for six years.it'been ups and downs of my pain.the pain in generally at the right side of my face and my cheek. nowadays im also experiencing some pains on my forehead and it' been going on for three months.during the attacks periods talking,eating,washing my face and take show has become a nightmare for me. actually i'am a positive person. i love people and the nature. i enjoy the life but since i had this i have become a different person. i dont want to live like this.im taking tegretol cr(200-400) today i had an appointment with the doctor.tomogrophic examination is clear!now the doctor wants me yo have brain angiography. do you know another way? if you know please send me email.i try to find a solution. i need help thank you
burcu <kartal_burcu@hotmail.com>
turkey - Wednesday, April 18, 2001 at 16:42:56 (PDT)

Hello, everyone! This site seems to be a bit quieter than usual, so I hope that means that you all are experiencing relief from your pain and are enjoying the springtime weather. I've had some thoughts about a possible relationship between TN and high blood pressure, and am wondering if anyone has read of any research being done in that direction? I've been going through an episode of TN for about 6 months which has gotten a little better, then a little worse, but has never gone into anything close to a remission in all that time. My blood pressure has been fairly high, but untreated, for the last couple of years (during which time, I developed TN.) Just recently, I decided it was finally time that I should see my PCP about my blood pressure, and he immediately put me on medication. Well, guess what, within a couple days of starting the medication, my TN mysteriously went away (at least for now.) So I started to think, if TN is caused by a blood vessel pressing on a nerve, is it possible that high blood pressure could play a part in this disease by exerting excessive pressure on that nerve? Does this make sense to anyone else? Could that be the reason why TN seems to get worse during times of stress? I would be very interested to hear if anyone else has had similar experiences, or any thoughts on this theory.
Mary Ann <mahartzell@usachoice.net>
USA - Tuesday, April 17, 2001 at 20:10:30 (PDT)

HELP ME PLEASE! I am 28 y/o and I am a bi-polar, manic depressive, and I need shock therapy ASAP!! I have been on all kinds of meds, and nothing works well for me. I can't function on a perfessional level anymore and I feel like I'm losing my mind, literally! I have attempted suicide several times, and I still get close to that point every day. I don't even know how I've survived this long. But the way I am living (which isn't living really) is getting to me head and I feel that I must try shock therapy, or my life will end, either by my own hand or my instanity will take over. I wish I was a normal, well adjust, mentally strong person. I almost used to be. Can anyone help me before it's to late? This is no hoax. Thank you!
Monie <IroSongZ@AOL.com>
Ewing, NJ USA - Monday, April 16, 2001 at 06:50:52 (PDT)

PLEASE HELP ME MY MUM TN AND SHE IS VERY VERY BAD SHE CANT TALK ANYBODY OR CANT EAT ANYTHING. PLEASE HELP ME IM VERY SAD ABOUT THIS SITUATION SENT A MAIL TO ME I WAIT FIND A WAY FOR US PLEASE
BURCU <KARTAL_BURCUHOTMAIL.COM>
ISTANBUL, TURKEY - Friday, April 13, 2001 at 17:32:09 (PDT)

My wife’s TN pain began 11 years ago. Recently, an MRI & MRA exam found nothing wrong. When the exams were administered she was not in pain. Doesn’t it sound reasonable that she should be going through her painful seizure when any type of test is administered in order to identify a cause? Have any of you discussed this with your TN physicians? Marion,, MA - Wednesday, January 10, 2001 at 22:01:08 Richard Vandament Marion,, MA - Thursday, March 22, 2001 at 20:02:00 Richard Vandament Marion, MA USA - Friday, April 06, 2001 at 22:48:56 (PDT)
Richard Vandament <Vando@mediaone.net>
Marion, MA USA - Wednesday, April 11, 2001 at 10:36:09 (PDT)

Hi, I was diagnosed with TN 7 months ago. I am not responding well to medication. I'm on my 4th kind right now and still in pain. I figured out on Sat. that when my pain is at it's wosrt even breathing hurts. How can I not breathe? Anyway tomarrow I'm on my way to Seattle to see a new Dr. Hopefully he can help me. So wish me luck!
Patty Ward <blueskyorchards@aol.com>
Monitor, WA USA - Tuesday, April 10, 2001 at 22:57:21 (PDT)

I have recently been diagnosed with TN. Thank goodness I have a great Doctor who is on the ball and could help. The strange thing is, from my research, I noticed that one possible relief is anti-depresents and I have been on those for some time. So I'll keep searching. It is very helpful to know that there are others out there who can empathize. Thank you so much for your site! Sincerely, Susi Bradford
Susi Bradford <Susirme@aol.com>
West Hartford, CT USA - Tuesday, April 10, 2001 at 21:38:53 (PDT)

Newly diagnosed with TN, resulting from meningioma brain tumor, which has been growing for 8-10 years and finally causing symptoms. Tinitus is another symptom (ringing in ear) Have only had two severe episodes of TN,the others are manageable with Advil so far. Keep Tegritol handy just in case but don't like to use chemicals inunless I have to. Brain tumor is in "watch and Wait " mode.
Judy O'Connell
Phoenix, AZ USA - Saturday, April 07, 2001 at 22:35:21 (PDT)

I was diagnosed with TN at age 15. I am now 28. I do not have MS. (As is often the case when diagnosed so young.) My pain was always well controlled with Tegretol. However, five years ago, I maxed out on Tegretol and my pain was so intense and non-stop that I had an alcohol block done out of sheer desperation and because that is all my local neurologist could do. I have since learned that this is an outdated procedure and know someone who had a horrible experience with it. My block lasted almost five years. I became pregnant with our first child as the block was wearing off. However I was blessed not to need medication until my second and third trimester. The baby is fine. In December we thought we would try again, so I began to go off the 400 mg. of Tegretol I was on. My pain came back fast and furious. I am currently on 1200mg of Trileptal, and 60mg. of Baclofen. I think the Baclofen does strange things to my thinking so I am trying to decrease the Baclofen and increase the Trileptal if needed. I am considering a procedure so that I can go off meds, and get pregnant. I am leaning toward the Radiofrequency procedure. As I am scared of the MVD, and accustomed to numbness. My concern is what type of TN I have. I have all the symptoms of Classical, however, I also always have an underlying pain, but not necessarily an ache. My episodes when not on meds, and sometimes on meds, can pretty much disable me. I cannot talk etc. etc. etc. without pain. And it is paralysing. Is it possible to have both types? I know I've droned on, but this is the first opportunity I have had to look for support. In this manner. If anyone is trying to reconcile pregnancy with TN, or has had problems with Baclofen increasing their anxiety, or can help me differenciate between atypical and classical a little more clearly (I am reading "Striking Back") please write. I know three people with TN. But no one in my age bracket or situation. Thank you! You're in my prayers.
Melina Hall <d.hall49@verizon.net>
Richland, WA USA - Saturday, April 07, 2001 at 18:12:48 (PDT)

Hi Everyone! I'm so happy to be able to share a success story with you. I was diagnosed with TN (after a dental procedure) last August 2000, was not able to tolerate drugs, acupuncture didn't work and I was DESPERATE (as I'm sure you all understand). I was given the name of a doctor in Los Angeles, California that was supposedly the "best". Well, that was and is true. Long story short, we did an MRI/MRA and found a blood vessel attached to my trigeminal nerve. The next step was endoscopic microvascular decompression surgery which I had five weeks ago. The TN is gone and the operation was 100% successful. I wanted to share this information and also give anyone who needs a magnificient, knowledgable and VERY EXPERIENCED doctor the name of someone who CAN and WILL HELP! His name is Dr. Steven Graff-Radford. He is the Director of The Pain Clinic at Cedars-Sinai Hospital in Los Angeles, California. I had four neurosurgeons tell me they couldn't help me before I met Dr. Graff-Radford. His telephone number is: (310) 423-9600. He works very closely with a brilliant neurosurgeon afilliated with Cedars-Sinai hospital named Dr. Hyar Shahinian. He did my surgery and he is the best as well. I hope to God this information helps someone and I pray your pain ends just as mine has. Please e-mail with any questions or just for support. God Bless!!!!!! Janismarla
Janismarla Ringel <janismarla@earthlink.net>
Redondo Beach, CA USA - Saturday, April 07, 2001 at 03:45:33 (PDT)

My wife’s TN pain began 11 years ago. Recently, an MRI & MRA exam found nothing wrong. When the exams were administered she was not in pain. Doesn’t it sound reasonable that she should be going through her painful seizure when any type of test is administered in order to identify a cause? Have any of you discussed this with your TN physicians? Marion,, MA - Wednesday, January 10, 2001 at 22:01:08 Richard Vandament Marion,, MA - Thursday, March 22, 2001 at 20:02:00
Richard Vandament <Vando@mediaone.net>
Marion, MA USA - Friday, April 06, 2001 at 22:50:07 (PDT)

I have been reading "Striking Back!", a great book about TN. You can get it from the Trigeminal Neuralgia Association. There is a section in there on chiropractors. Has anyone gotten whiplash and then had the TN pains? It suggests going to a chiropractor. It says your cervical spine can be stressed and cause the pains. Let me know if you have. I am not one for chiropractors but am interested if anyone has tried this.
Kay Currier <kay3031@hotmail.com>
USA - Friday, April 06, 2001 at 20:52:46 (PDT)

i'm not sure that i have tn, but i have this terrible shooting and exploding pain on the left side(jaw, ear and head). i've been getting these pains every 3 or4 weeks that last a day or two.this has been going on for 6 months. i've been to a couple of doctors who seem to think it's from grinding my teeth. my dentist isn't quite sure but thinks stress is the cause. i believe i know what pain you are going through and i feel for you. hopefully i can get more information on this tn and not face anymore pain in the future. i would like to thank you for listening to my venting(or as some people say "whining") . thanks again and good luck! tim gilbert
tim gilbert <timmytimbo1@aol.com>
flint, mi USA - Thursday, April 05, 2001 at 17:44:29 (PDT)

I have TN but it is under control without drugs or surgery. I found an answer that has stopped the spasms that were lasting up to 30 seconds and coming frequently throughout the day and night--there was no relief. I am an RN and this is non-medical, safe, no side effects and since I have been using these products, I have only had a few very brief attacks in the last year. I have a life again and I feel obligated to share this information with anyone who will listen. I will share my story with anyone interested. Contact me at my email address. Be Blessed. Terry
Terry L. Rubel <wellnessnaturally4u@5pillars.com>
Lewisville, OH United States - Thursday, April 05, 2001 at 14:24:04 (PDT)

Well, I'm enduring my third attick in five weeks (my atypical TN episodes last 12 to 72 hours solid). I'm worn out with the pain and drugs. Response to PINKCLOUD4---I don't know how you work with the public while you fight TN. I'm on disability for MS so I don't have to deal with putting up a front. I now work at home when I can. Luckily, my employer is my very understanding and supportive (in more ways than one) husband. Of course, I help him for free whenever I can and enjoy feeling useful. But if I had to be a hostess regardless of pain and drug effects, I'm afraid I wouldn't last long. I'm totally unreliable and that was my argument before the Soc. Sec. appeal judge who granted me SS after a year-long battle. Of course my little SS check doesn't even cover my co-pay for TN/MS drugs. Anybody out there managing to work regular hours in spite of TN? How do you do it? I hate knowing I couldn't support myself if I had to. Response to uhhuhhoney5--------I saw "Lorenzo's Oil" (Sarandon was great but Nolte's accent was grating). I think you're right about the lesson in self-reliance. There's no substitute for knowledge in this battle with chronic illness. It's knowledge that helps me brige the gap between fear and faith. I have a friend whose grandson has that same disease as Lorenzo and is surviving on Lorenzo's oil. Since I have MS as well as TN, I'm well aware of the function of myelin. In fact, my TN is probably due to trigeminal demyelinization of the trigeminal nerve. I've read that approximately 6% of MS patients also have TN, which is a higher incidence than the general population. Anybody else out there with both TN and MS? Thanks for your attention and I wish you and your significant others well as you live with TN.-------Mary
Mary
USA - Tuesday, April 03, 2001 at 15:33:52 (PDT)

The movie "Lorenzos Oil" starring Susan Sarandon gives a gripping perspective on the importance of myelin in neurological disorders. Has anyone seen it? It's a *very* gripping movie, also starring Nick Nolte as Susan Sarandon's husband. It also suggests that the medical community is not "all knowing" and that patients' and families' research should never been laughed at. The end of the movie is very gripping as it shows dozens upon dozens of people helped by Lorenzos Oil. It was a true story turned into a movie. Thank you, Susan Sarandon for your wonderful acting!
Ro <uhhuhhoney5@aol.com>
new york city, USA - Tuesday, April 03, 2001 at 14:43:56 (PDT)

I recently have been diagnosed with trigeminal neuralgia,I am lookin for a Dr. that specializes in this. I am in alot of pain. I thought I was the only one in the world with this. I'm not alone.I feel my dr. doesnt understand the pain im in. asking me to return to work. does he know what he is asking? my job isa rest. manager, smile, smile, it hurts to smile!!! Thank you for listening.
vickie <pinkcloud4@juno.com>
marysville, ca USA - Monday, April 02, 2001 at 17:20:37 (PDT)

I am a current 16+ sufferer of MS. I just got through a Steroid treatment, of Prodnesizone<-sp. I had a 4 day season of IV treatments every 6 hours, I had an IV treatment. My wife and I thought it would be wise for me to see if I could stay with them. They agreed. I am on taking the oral Prodnesizone<-sp. I have set-up the internet so I can communicate with my friends back home in Manhattan, KS. My parents live in Yuma, CO. One of the problems I have is tremers then I type. The MS has affected my left side. My version of MS is Cronic Progressive version of the disease.
Jeff Myers <tootallks@plains.net>
Yuma, CO USA - Monday, April 02, 2001 at 15:37:49 (PDT)

do you have loss of memory with this condition because i do ?
mrs sharran ager <pen-y-ghent@ntlworld.com>
leicestershire, england - Sunday, April 01, 2001 at 00:39:19 (PST)

GI am 23 years old and was diagnosed with trigeminal neuralgia 2 weeks ago. My doctor thinks that this condition is the result of a head injury near my temple that occurred about 1 month ago. Since the head injury I have had stabbing pains in the right side of my face including the jaw, cheek, nose and eye. The pain started only at night for an hour or so, then it progressed to 3- 5 hours during the day also. I have been taking 3 pills of neurontin (300mg). I have been to the emergency room and have had numerous diagnoses including: sinus infection, facial contusion, torn cartilage in my jaw, and a mild concussion. The pain has gotten better in the past couple days, but it is getting to be very frustrating. I am declaring war on this condition and it will not control my life!!
Robert Olson <rob_bobbyolson@hotmail.com>
Capt. Cook, HI USA - Thursday, March 29, 2001 at 11:07:45 (PST)

Hi everyone. As a guy who has had MS for about 11 years, I've also had this frustrating ailment in my lower right jaw for the last since about (?) 1998. I've had shooting, electric pain which I treat with Neurontin. I'm also be considered for surgery (radio frequency rhizotomy) this April since the Neurontin is losing its effectiveness. I'm glad to share my thoughts with anyone interested in commutating with me with similar experiences with this painful and very frustrating condition.
TOM DETTELBACH <delbach@optonline.net>
HOPATCONG, NJ USA - Wednesday, March 28, 2001 at 22:10:57 (PST)

I was diagnosed with TN in 1996 and was on tegretol for over a year when I suddenly woke one nite to be a giant hive. Found that I am extremely allergic to the stuff and so for the past 2 years I just endured the pain which seemed to be much less intense. This past fall I had an occasional attack but thought it was ony stress due to our business problems. Then we sold the company I thought it would go away. What a laugh that was the pain is so bad at this time that I am unable to eat or sleep some nites. It is unbelievable as all of you know. Last week there was an article in the newspaper about the Gamma Knife procedure being done at a Hospital in Milwuakee and my doctor has referred me to himfor an appointment next Monday. If any of you have an suggestions or info about this procedure please free to contact me about your experience. Thank you to any that respond and Blessings to each on you in this guestbook. We can truly say " I know your PAIN!!" Susan
Susan Berres <susan@kut-rite.com>
White Lake, WI USA - Wednesday, March 28, 2001 at 12:46:42 (PST)

Hi everyone. I was diagnosed 2 years ago with TN--started after a root canal. Shooting electric pains of such intensity that I walked the floor for hours just sobbing. Took Tegratol for a few months and the attack seemed to subside. Had to have re-treat on same tooth (small spot still had some infection) and sure enough, i've been in agony for days. seems like any root canal or invasive dental procedure triggers my TN. I've taken Neurontin too for migraines--I often wonder if the too conditions are related. Had a lot of weight gain with Neurontin. i now take Topamax for migraines. Anyway, I was wondering if anyone has had success with any sort of preventative measures before having invasive dental procedures to ward off a TN attack? I dread the thought of ever going through this again. Bless you all. Kathy
Kat DeKemel <ORACLEPRO@aol.com>
USA - Tuesday, March 27, 2001 at 17:09:57 (PST)

Hi everyone. I was diagnosed 2 years ago with TN--started after a root canal. Shooting electric pains of such intensity that I walked the floor for hours just sobbing. Took Tegratol for a few months and the attack seemed to subside. Had to have re-treat on same tooth (small spot still had some infection) and sure enough, i've been in agony for days. seems like any root canal or invasive dental procedure triggers my TN. I've taken Neurontin too for migraines--I often wonder if the too conditions are related. Had a lot of weight gain with Neurontin. i now take Topamax for migraines. Anyway, I was wondering if anyone has had success with any sort of preventative measures before having invasive dental procedures to ward off a TN attack? I dread the thought of ever going through this again. Bless you all. Kathy
Kat DeKemel <ORACLEPRO@aol.com>
USA - Tuesday, March 27, 2001 at 17:09:55 (PST)

Hi All. Just happened on this web site while researching TN which I have had for 16 years. It has come and gone for all these years thoough I could never get off of a low dose of tetretol without the pain returning. This flare-up has been extreme and I am considering the Gamma Knife. I would love to hear from any of you who have had this treatment. I take Tegretol 900mg and Neuronton 2400mg a day and this leaves me foggy and lethargic. I just resigned a new job after a 3 week absence hoping I would adjust to the meds--they couldn't wait any longer for me to return. I'm a nurse and I have to think and move quickly all day long. How do the rest of you deal with work and then of course the insurance issue. Thank you to one of you who said "when people look at you, you look ok" People can't understand unless they have seen you in the middle of a really severe attack when absolutely nothing helps. Feel free to email me, though you might also cc to the list for others to see. Pam
Pam <denko@olympus.net>
USA - Tuesday, March 27, 2001 at 12:37:50 (PST)

Wow, what a wonderful resource for TN sufferers! I was diagnosed with TN in late 1997. Initially I was put on a relatively low dose of Tegretol, and it was a miracle. All my abcessed teeth quit hurting. I say that tongue in cheek, as most dentists just don't understand TN, and I had four teeth pulled before being diagnosed correctly. In time the dose of Tegretol had to be increased to keep up with the pain. The Doctors I saw all warned me that the suicide rate was high with this disorder, but not one would suggest a long term cure. To make a long story short, after the Tegretol was maxed out, I was taking Neurontin and Klonapin with the tegretol, and I felt like I was walking through jello. In January of 2000 I was desperate, because in spite of all the medication, I was still having breakthrough pain. I went to the web and researched TN. One physican's name came up, Dr. John Alksne at Thornton Hospital in San Diego.(Part of UCSD). His list if credentials is vey long. I emailed him, and was answered in two hours!! He suggested some medication changes, but also thought I should be evaluated for an MVD. I was 46 at the time, and he felt that a lifetime of medication was an unpleasant prospect, even if it continued to work, which we had already proven was not the case. I made an appt to see Dr. Alksne, and within a month of my visit, I was in the OR, having the MVD done. It has been a year now, I am pain free, and medication free. I did have a short (3 week) bout of aseptic meningitis after the surgery. I guess this is a condition, free of infection, but a possible side effect because of the location of the incision. My message is this. Don't ever give up. Help is available, but you may have to find it. Become your own advocate. I now know the neurologists I saw did not have a clue how miserable TN, and/or all the medications can be. There are many procedures available to ease this condition. Time is important, as the longer the nerve is disturbed, the less likely the outcome will be successul. Find a physican who will listen. I am so thankful I did. Please feel free to contact me, if I can be of any help. Sincerly, Carole
Carole <divelpn@aol.com>
South Fork, CO USA - Sunday, March 25, 2001 at 16:26:18 (PST)

Hello, It has been a while since I have last submitted an entry but I thought that I needed to update. Well here is what has happened since my last entry, I saw my neurologist for my routine visit and he decided that maybe I think about seeing a neurosurgeon for a another opinion for some other treatment since my pain is far from under control. I am thankful that I do not have the horrilbe jolts that I was having, I can honestly say that the TEGRETOL has done its job there, but for the numbess, horrible teeth and jaw pain and the ear pain and the throat pain, it just adds up to not being controlled. So I am now on TOPAMAX as well as the TEGRETOL and shall see what happens. I did ask him about the possiblilty of ATN vs TN and I honestly did not get a real answer on that one, I guess he did not know mcuh about the 2. I explained to him that ATN is harder to control with the meds and surgery is not an option either b/c they dont work for people with ATN, well so I have read and heard. Well all I can do is to continue to pray that they find a cure for this or someone out there finds out something that will help each and everyone of us out there. Until then, we just wait and take our meds or try whatever treatments we can to make this thing someone better. Until then, I will keep you all updated on the results of my neurosurgeon appoinment and let you know what he has to say. Stay pain free and well. You are all in my prayers' Lisa
Lisa <LisaE0608@aol.com>
phila, pa USA - Sunday, March 25, 2001 at 07:47:23 (PST)

61 HI! I WAS SEARCHING FOR INFORMATION ON TN WHEN I CAME UPON THIS WEB PAGE BY ACCIDENT. I NEVER THOUGHT THERE WOULD BE SO MANY OTHER PEOPLE AFFECTED BY THIS DISEASE. MY HEART GOES OUT TO EVERYONE THAT HAS FELT THE KIND OF PAIN THAT TN CAN INFLICT. WHEN I WAS ABOUT 14, I HAD A ROOT CANAL DONE ON A ONE OF MY FRONT TEETH. I BEGAN HAVING PAIN AROUND THE TOOTH, BUT I COULD ALWAYS HANDLE THE PAIN WITH OC PAIN KILLERS. WHEN I WAS 23 I BEGAN HAVING PAIN ON THE ENTIRE RIGHT SIDE OF MY JAW AND THE SAME OLD SAME OLD WASN'T CUTTING IT ANYMORE. I WENT TO SEE A DENTIST ABOUT THE TOOTH AND HE SENT ME TO A SPECIALIST. I WAS TOLD IT WAS NOT MY TOOTH BUT SOME SORT OF NERVE DISEASE. I WAS INSTRUCTED TO CONTACT A MEDICAL DOCTOR. I SAW THREE DOCTORS BEFORE I WAS DIAGNOSED WITH TN. I WAS PUT ON TEGATOL FOR A COUPLE OF MONTHS , BUT WITHOUT HEALTH INSURANCE, MY MONEY WAS RUNNING OUT. I QUIT TAKING THE MEDICATION FOUR YEARS AGO AND, BY THE GRACE OF GOD, I GUESS I'VE HAD A REMISSION OF SORTS. I'VE NOT HAD A 'BAD' ATTACK, JUST SEVERAL MANAGEABLE ONES. I HOPE AND PRAY THAT THIS 'RESTING PERIOD' LASTS FOUR MORE YEARS. I AM ONE OF THE LUCKY ONES. I KNOW THAT NOW AFTER I READING THIS GUESTBOOK. THANK YOU FOR AN INFORMATIVE SERVICE. BLESS YOU ALL!!!
HEATHER WARE <warerhl@aol.com>
CACHE, OK USA - Friday, March 23, 2001 at 20:47:42 (PST)

Hi All, I just read an article in the Ladies Home Journal about the use of BOTOX on a variety of conditions including MS and facial ticks. Interesting. Also, have heard a lot lately about using a 'gluten' free diet because of what gluten supposedly does to the myelin around the nerves. Any ideas about this??? My husband is thinking of switching to Neurontin from Tegretol. I just saw at the other website facial-neuralgia.org that someone was using "Elavil" for pain reduction. Like I've mentioned before, my husband had Gamma Knife surgery back in Dec...no measurable results as of yet, but lately he has had a wierd sensation in his left eye. He always feels like a 'hair' is in his eye that he is trying to get out but there is nothing there and it doesnt' look irritated. Just the feeling that somethings in it. He still hears the sound in his head when he gets up in the mornings, like a fog horn in the distance...it goes a way after he gets up after a while. Probably the Tegretol. Ugh! Blessings to you all.
Scarlette <artseaone@aol.com>
USA - Friday, March 23, 2001 at 14:46:59 (PST)

If this is a dupilcate I'm really sorry. Over the last 2 years I have made a couple entries in here and this has been great support for me.I'm 35 a single mother of 2 (6&8) and have had TN for 15 years. In July of 2000 I had MVD which was not very successful. At that point I would have done anything to get pain relief and some how get off all the drugs. So in October of 2000 I had MVD again but this time I had them CUT the nerve.(this is something I would NOT reccommenned anyone have done) I now have a complete new set of problems along with TN pain that has returned. I think my Dr may have cut the nerve to high. My understanding of TN is your face is separated in 3 sections and usally TN sufferors have pain in 1 or possibly more of the 3 areas sometims all 3. Well I have ALL 3. It feels like he my have only CUT the top 2. Because I'm numb from my cheek bone up. But I still have pain in my ear and teeth. Cutting the nerve at first left me completely numb on the entire side. now I can feel up to my cheek bone. From every one I have talked to they have said the nerve if cut should have been cut around the base of my neck. He cut it even with my ear. The new problems this has created is (when my mouth was numb) I bit into my tonge,lip and cheek so deep and badly when eating they became infected, this can creat real problems. My eye does not water so I have to put drops in it every 2 hours,I can't cry on that side. I can touch my eyeball and not feel it and I don't blink so I have to remember to close it every couple of minites of it drys out. The eye dose not get irritated ( so it dosn't close when something flys in) so you can hurt it and not even know it. I now wear glasses at all times just to protect the eye from any harm. I now see a eye doctor every 6 weeks from now on to check the eye for any possible damage. My whole intent for the surgery was to get off the drugs. Well since alot of pain came back I'm back on them again. I felt like it failed at first and for a coulpe of months went into a very deep depresion. I have been going through this for so long it seemed there was no end in sight.I'm now looking at other possibilitys. For all of the people who have been diagnosed with TN I recommend RESREACH!!! RESREACH!!!The more we know the better off we are. We have options and don't let your Dr.s tell you otherwise they may just not know what is available or the new treatments used just recently. I found understanding some of the terms they use makes them tell you more and if they think or relize you have researched they will do some them selfs.
Jan <jan.zook@grandronde.org>
OR USA - Thursday, March 22, 2001 at 11:08:49 (PST)

Hello again! This is outstanding news but thanks to an idea I found on this web site, I have gotten off of caffeine. It has almost been a week and my pain is greatly reduced. Instead of having repeat attacks that are way up there on the great pain scale, now they are much fewer and farther between and when they hit, it is only one at a time and they are much lower on the pain scale. Next week I am going to try getting off of the cigarettes and see if that helps some too. If anyone has tried getting off the cigarettes please write to me and let me know. I really appreciate it and hope you all have a pain free day. :)
Jeanne <jvhyde@aol.com>
AR USA - Tuesday, March 20, 2001 at 15:37:24 (PST)

I had not heard of trigeminal neuralgia until three months ago. I have been diagnosed with TMJ which turned out to not be true, ear infections, chronic sinus problems, and many trips to the dentist over the last two years. Two months ago I was diagnosed with trigeminal neuralgia. I am real confused because my facial pain started three months ago and only one time a year ago. But I have had this awful ear pain in my right ear for two years and have run constant sinus infections also. I have a low grade fever for the last two months and I have pain radiating to the other side of my face and ear. I am so confused and my neurologist doesnt seem to think the ear pain is caused from the neuralgia but my GP says it is. My GP will not take into account any of my past med records that show that I had constant sinus infections and this is what I believe led to my neuralgia. I have had lots of tests but nothing shows up and I am left confused as ever. I cry all the time from pain. If it isn't the constant facial pain, then it is the ear pain. I am responding well to the neurontin but she has to up my dosage to keep it working but nothing ever stops this horrible ear pain. I feel like I am losing it completely sometimes, like I cant live my life like this. I am 30 years with two kids and I am not adjusting well to all of this. Am I suppose to live in pain forever, I dont understand why doctors dont help more. My doctor was like a robot to me today. I know my body well and I know there is more going on than this neuralgia, I have been sick for a year without the neuralgia with sinus problems, but she says there is nor has ever been any sinus problems even though she has only been my doc for three months. I have been reading this guestbook on some of my worst nights of pain and it has been a godsend reading that I am not crazy on how I feel. Right now I am in total pain in my ear and my wisdom tooth but according to my doctor it is no big deal!!!!
Karrie <quenie980@aol.com>
USA - Tuesday, March 20, 2001 at 00:40:47 (PST)

I am so very thankful for this web site. I was diagnoised last month with TN. I will be seeing a neuroligist in 2 more weeks. At this time I am taking baclofen 3x a day, nortriptyline at bedtime, and percocette every 2 hours as needed. By adding the nortriptyline, I hope to be able to ease off the percocette. Being an alcoholic in recovery, I have been having a hard time dealing with taking so many drugs. The AA meetings I attend help with that. I have to admit, I am so scared of what my future will be with TN. I can't drive because of all the drugs. I don't know if I will be able to work in a field I just spent 3 yrs in school for. It's hard to read because wearing my glasses triggers pain. Also, my vision blurrs at times. Thank you all so much for posting your experiances, it has helped to know there are others out there. I would like to know how people get around going outside in the cold. I have been wrapping a scarf around my head, but the wind gets through, and sometimes just the scarf on my face causes pain as well.Please, any sugestions are welcome......and I would love to her from others. I am 41, and a single mom of 2 kids, 14 and 18
Doe <doe_eyed1999@yahoo.com>
Denver, CO USA - Monday, March 19, 2001 at 13:53:53 (PST)

Hi, I went to a neurologist last week who said I do not have trigeminal neurolgia because trigeminal does not start in the ear like mine does, nor does it switch sides. He thought maybe an antidepressant would help. I was upset at the appt because of all the pain I have been experiencing last week. The pain has been severe since it switched to the left side. I made several trips to the emergency room for shots of demerol. I am now on Vicodin for the pain almost daily and taking 1800 mg of Neurotin also. One ER physician suggested taking Advil along with the Vicodin which seems to help. The neurologist suggested an MRI and lymes testing plus other test. He will send his report to my family MD who will than order the test, which could take several days. I was wondering if anybody else has had this experience.
Janice <rcollins@mlecmn.net>
Aitkin, mn USA - Monday, March 19, 2001 at 05:47:00 (PST)

Wow, I have just scrolled down through the guestbook and my mind is boggled by what I am reading! I was diagnosed six years ago with trigeminal AND occipital neuralgia by my GP. She put me on Naproxin and sent me to a dentist to check for TMJ. The Naproxin caused terrible mouth, throat and stomach ulcers to the point that I could not swallow water without using antisthetic mouthrinse and my MD's PA tried to tell me the sores were from stress when the Drug handbook clearly states that this is a common side effect of Naproxin. The dentist did not find evidence of TMJ, but I do clench and grind my teeth in my sleep and he made a night guard for me to wear at a cost of $450.00, most of which was covered by Delta Dental. I was on an anti-depressant for several years but have discontinued all of my prescription meds and am experienting and doing research. Have any of your doctors told you that neuralgia tends to run in families? My father had trigeminal neuralgia several years before I was diagnosed, I didn't become aware of the family connection until just recently. Because of the occipital involvement the pain can appear anywhere in my head, neck and often involves my shoulders. I also get a persistent popping and shocks in the back of my neck. I wasn't aware until I found this website that the choking sensation I get was related, I often feel like I have an obstruction in my throat. My neuralgia is always worse in the winter months and I usually wake up with the pain, if light is a factor would working at my computer late at night be triggering it? I have tried heat, such as a hot shower or a heating pad as recommended by my doctor, this sometimes gives relief but one really severe bout last week seemed to get worse after the shower. By the way, I am over-the-counter Naproxin (Alleve)to control the pain right now. I am not able to work full-time at a regular job and so no longer have no medical insurance. I am considering disability. My pain has been progressively worse since the diagnosis, but I am just starting to learn about what diet can do to help and I prefer natural remedies to surgery and drugs. Will look forward to reading more from all of you.
Sylvia Jarrett <sylviaj@rmci.net>
Middleton, ID USA - Sunday, March 18, 2001 at 09:32:24 (PST)

Hello, I too have suffered from TN for only a year and a half. But, am experiencing tremors again. My neurologist upped my Neurontin med to 1800mgs a day. But, still I haven't had any relief. It is great to know that there are others out there with my type of pain. Sometimes, I feel that what the heck is going on with my mouth, jaw and ears. This series of tremors has now gone up to my upper teeth and eye area too, so I know that they are getting worse not better. I'm looking for support groups in the area, if anyone knows of any...please pass them on. Thank you for having a place to release some of this tension and pain. And for those of you who suffer this unbelievable pain, God bless you and good luck, Lillian :)
Lillian <Orfam1@aol.com>
Whittier, CA USA - Saturday, March 17, 2001 at 08:24:32 (PST)

I would like to hear from women that are suffering from vulvar dystrophy. i really need to know i am not alone. thank you.
karen orr <krane97@aol.com>
USA - Saturday, March 17, 2001 at 00:09:31 (PST)

I am so glad i came across this website.I hope to hear and read about the same thing i am going through from other people and hope i find out more about it. thank you
karen orr <krane97@aol.com>
lancaster, tx USA - Saturday, March 17, 2001 at 00:06:19 (PST)

I have been diagnosed by an Eye Neurologist as having Trigeminal Neuralgia. I am not totally convinced that is all I have. What are the known symptoms of TN? I have blurred vision, dizziness, pain on the left side of my face, around my ear, neck, back and down my left arm. I also have "out of body experiences." Are these "all" symptoms of TN?
sharon felkins <sharonfelkins@yahoo.com>
oklahoma, ok USA - Friday, March 16, 2001 at 19:55:00 (PST)

Hello friends. Thank you for the suggestions regarding caffeine. I have given it up today (for the first time in years... no soda or coffee for me) and while I am not having TN symptoms today, I still wonder if it's coincidental. But I'll keep trying it with hopes that it's not. Thanks for the great ideas. Keep the coming.
Jeanne <JVHyde@aol.com>
AR USA - Friday, March 16, 2001 at 12:58:18 (PST)

Hello, TN sufferers. I have been doing some compiling of information on TN. I have reading through different sites and whatever articles I can get my hands on. So far I have learned that there may be correlation between the flare up of TN and caffeine, wheat, dairy and nicotine. TN is treated with carbamazepine(tegretol) first and if it lessens or goes away it is assumed to be of the non-tooth related kind. If it is the tooth related type of TN it is assumed it will go away when the tooth problem is remedied. From what I understand the sheath that surrounds the nerve diminishes and the nerve is exposed to veins and flesh. The exposed nerve causes the pain. This sheath can regenerate and repair itself with time, I understand. Some propose that vitamins do a great deal for their pain. If a combination of meds do not allieviate the pain then one seems to have to resort to a surgical procedure. They seem to be, predominately, the "block" (injection of blocking material into the nerve area), the Gamma Knife (a procedure one would want if their pain were unbearable) and just cutting the nerve and in result causing facial paralysis. And there are many methods and means that can be tried before any surgical procedure. Some things work for some that may not work for others, it seems. It sounds as though relief is dependent on regenerating the sheath surrounding the nerve. That should seem to be our goal. What I am curious about is if there may be a more obvious answer. For instance are the great majority of sufferers: elderly? had past bouts with shingles? smokers? overweight? not get enough exercise? stress out easily? Is there a higher occurance of TN dependent on the climate? There just doesn't seem to be enough solid information on how to handle this as treatment seems to be developing right before our very eyes. (our sometimes aching or blurry eyes). Good luck and I am praying that you all find relief. My pain has been subsiding but I hate the way it slinks out and then lashes back. I never know when it could resurface. Please send me any info you have the time to send. I don't want pass along any misinformation so please do your own research I am just expressing what I feel regarding TN. And remember, "This too, shall pass.." I would venture to say that we all might find relief from proper nutrition, exercise and vitamins and avoiding caffeine. Thank you to those of you who sent emails after I posted a message. It is very comforting to know that you are not alone. God bless.
Amanda <newgirl99@hotmail.com>
USA - Thursday, March 15, 2001 at 03:46:59 (PST)

Hi Everyone, My husband finally had the Gamma knife surgery back in Dec. I have to tell anyone considering this that it wasn't as simple as we thought it would be. They said it might take up to 6 months to get the fell benefit, well it has been nearly 4 months and the pain is still with him. If anyone has any questions about the procedure I will be happy to try and answer. If anyone has had this surgery, would you please be so kind as to write me and let me know what your experience has been, how you feel and where you had the Gamma knife done?? My husband is still on Tegretol and Vicodin and still has pain and bad affects from the medication. In a nutshell the procedure wasn't "painless" and you have to wonder if these intense beams of radiation are doing other damage. We thought long and hard about the procedure along with the other options and this is the one we chose because it was less invasive than other forms of surgery in addition, the time off from work he could not afford. I wish all of you well, blessings and healing soon. Never give up, because we know we are all in this together. Yours, Scarlette
Scarlette <artseaone@aol.com>
USA - Wednesday, March 14, 2001 at 17:02:27 (PST)

I wrote back about 10 days ago but I just wanted to say that when I had an episode in 1997 I had searched the internet on this Guestbook and found out a couple of things. One thing is to stay away from caffeine as that does irritate your nerves. That means any kind of coffee, chocolate and anything with caffeine. Also I started taking calcium/magnesium vitamins. That seemed to help that episode I had and I just share that with all of you. Now with this current episode I need to come up with something else that could help so a person doesn't need to do the surgery. I have gotten some information on being careful on what we eat. I am doing more research on that. Best wishes to all of you.
Kay Currier <kay3031>
USA - Tuesday, March 13, 2001 at 18:35:26 (PST)

I saw a neursurgeon and feel that at some point I will have the MVD surgery. For now the new round of meds are working but iI know that at some point they will quit and I will have to increase or try a different regime of meds. I would like to talk to those of you that have had the surgery to get an idea of the experince and what to expect. I have talked to several people out there that this surgery has worked for so I am hopful that it will work for me as well. Look forward to hearing from you. Debbie
Debbie Weatherman <GirlyQ40@aol.com>
Louisville, Ky USA - Sunday, March 11, 2001 at 08:25:39 (PST)

hi, I have a mother which is suffering eveyday from TN I recently read about GAMMA KNIFE SURGERY and told my mother about it, and she desperately wants to go for the surgery we tried medication but it doesn't seem to help her. Can anyone who has had the surgrey or knows more aboat it please foward some input. we made an appointment for NYU for the end of the month so if u can respond before that date, so we can go somewhat informed. My family would greatly appreciate all your efforts, thank you
fernando <fm061@aol.com>
nyc, ny USA - Saturday, March 10, 2001 at 15:19:49 (PST)

I have just found this page after searching for info on neuralgia, have just found out this is what has been causing my neck pain, took my first dose of carbamazepine last night, have a question, does anyone have a pressure choking feeling along with the pain?? look forward to hearing from you,
Lesley <buggap@home.com>
- Saturday, March 10, 2001 at 14:21:56 (PST)

I

Hi Guys I read all your emails and my heart goes out to each and every one of you. Seems like we have all been down this road before. It is not an easy one at that. I live in Ontario, Canada and I am interested in talking with other Canadians with the same condition. Pls feel free to email me. Thx Lezlie Keep up the good work Deb - your page is great!
Lezlie <reba111@hotmail.com>
Ontario, Canada - Wednesday, March 07, 2001 at 13:11:10 (PST)

Hello! I feel for those of you who are suffering right now from this terrible affliction. My case is (at this point) somewhat mild compared to some of the cases described on this site. I am a 28 year old female who started experiencing shock like, shooting pains up the side of my face extending from my chin up into my scalp. I pretty much diagnosed myself and called my family physician. I took quite a bit of information I had collected from the internet to the appointment. I was disappointed when he precribed carbamazepine, as I knew the side effects were horrible. I took maybe 5-6 of the pills over 3-4 days. I stopped because the pains had subsided greatly and over the next month were almost completely gone. I was maybe having pains every other day and very briefly, just a shock wave or two. What became more prevailent during this time was the rollercoaster-like dizziness that I would experience about 5-10 times a day. Sometimes I would actually have to sit down because I thought I may lose conciousness or fall down. This happened for a month or so and then thank God that sort of subsided. But again I am starting to feel the shock-like pains. For the last few days they have been creeping up, reminding me of their presence. Just occasionally though--like maybe 5 quick shocks today. But what I am wondering is if I should try to head it off with a couple of Carbamazepine pills over the next few days. I do not want to take this pill unless it is absolutely neccesary, it affects me a great deal and I have a small child and have to work which is hard when you are either dizzy, throwing up, or lethargic. Does anyone have any advice? I would appreciate it. I believe my condition is related to shingles(which I have had a few times in the last ten years) and is probably post-herpetic neuralgia, I suppose. My fear is that the pain may come back full force or maybe even stronger, God forbid. So any info anyone could offer I would appreciate. And again, my thoughts and prayers are with all of you who are suffering from horrible pain. This pain that is so invisible to everyone around you. I sometimes think maybe God has made me go through this so I could understand what some people have had to go through. How really lucky one is to be "pain-free". And to never take things for granted. Again, best of luck to all of you. I hope you all find some sort of reprieve from the pain, no matter how short lived it may be, to catch your breath and enjoy a much needed rest. A goods nights sleep I wish for all of you. Amanda newgirl99@hotmail.com
Amanda <newgirl99@hotmail.com>
ia USA - Wednesday, March 07, 2001 at 03:56:06 (PST)

First let me say that my heart goes out to each of you and you will certainly be in my prayers. I am a massage school owner and recently had a student inquire about TN for a relative, so.... I found this website. I am interested in what anyone has to say with regard to massage, neuromuscular therapy or relaxation techniques. Having read a great deal this evening alone, I realize the treatment outcomes are as individual as each of you and what works for one may not for another, however, if massage offers even temporary relief from pain, I would certainly want to explore this further. While we (massage therapists) are not always recognized by the medical community (or the general public in some instances) we fortunately have access to several research foundations through national and international massage therapy associations. Please contact me with any information you may have at your convenience. I pray for pain-free days for each of you. Thanks for sharing so much of yourselves for those of us who are here to learn. Please respond to mtiinc@bellsouth.net
Tammie <mtiinc@bellsouth.net>
Cullman, AL USA - Tuesday, March 06, 2001 at 20:13:06 (PST)

The pain just keeps coming back and has gone on for so long. Nortriptyline worked for awhile but now my local P.A. is trying to convince me I'm crazy. Your support is appreciated.
Nancy Gausepohl <webejn@sandersontx.net>
Sanderson, TX USA - Tuesday, March 06, 2001 at 17:31:18 (PST)

Greetings, I just stumbled across this webpage while searching for the e-address of the doctor that performed surgery on me back on October 27, 1997 to correct my trigeminal neuralgia. I suffered with extreme pains on the left side of my face for @3 years before I maxed out on the Tegretol, Neurontin and Stadol(pain med). When I could take no more of it, I did some web-research and identified Dr. Rhoton at Shan's Hospital in Gainsville, Florida. (I'm not sure, but I believe he is now retired.) As I indicated he performed my surgery back in '97 and the pain is completely gone! At times it's hard for me to believe. The reason I was looking for his e-address was to send a spontaneous thank-you...I'm just having a regular day at work today, my life has gone on - without pain, and when I saw this website I thought I'd stop in and offer some encouragement. I know that the option of brain surgery is scary (it terrified me), but I would encourage everyone to at least gain of thorough knowledge of what all the options are. I'd leave my e-address, but I'm currently at-work and my home e-mail is temporarily not connected. I will check back in, to see if anyone has a response/questions.
John Bishop
Baton Rouge, LA USA - Tuesday, March 06, 2001 at 15:08:05 (PST)

I have had trigeminal neuralgia since a car accident last year. I can't function taking tegretol and I can't function when in pain. Has anyone had their pain following a whiplash injury. I would love to hear from you. Kay
Kay <kayhine@aol.com>
Worcester, England - Saturday, March 03, 2001 at 16:04:26 (PST)

Hi, this is my first time writing but I have spent lots of time reading all the comments on this Guestbook. I am a 9 year sufferer of TN and each time an episode comes back it has been harder and harder to regulate with medicine. I have been fortunate to have been able to do this. But this last time has been 2 months and I am now up to 2400 mg. of Tegretol and 80 mg. of Baclofen. My neurolgist will not prescribe any more medicine. Some days seem better than others but eating becomes the hardest when bad. I have always wanted to been able to regulate my medicine but feel now I have reached my limit and after this many years I will have to do something surgically. Like some of you have said the reality of TN is that is will always be with, pain or not. Now I am thinking I have reached the point of being with the pain without doing a surgery. None of the options are any good. One strange thing is that in 1991 it was on the left side and then on an episode return in September of 1999 it was on the right side!! Has that happened to anyone. It makes you wonder about doing something on the one side and then will it come back on the left the next time.!! Let me know if any of you have experienced that. I do have an appointment at Mayo Clinic on the 19th and don't know what to do. I know I can't continue on as I am. This is so hard to explain to people because they look at you and you seem OK. This is so invisible for people to know what you are going through unless you are yourself. I hope to hear from some of you. So go ahead and e-mail me with the things you have tried and what has worked and what has not. Thanks.
Kay Currier <kay3031@hotmail.com>
USA - Saturday, March 03, 2001 at 14:01:52 (PST)

CATHY IN TX------I've had atypical TN for many years (most of them undiagnosed and therefore untreated). I'm fortunate that my meds and the things I now do to take better care of my spirit have helped me tolerate the pain better and increase the span between attacks. I'm beginning to have typical TN symptoms and hope these don't shake-up my quality of life. My TN has never gone away but its never been as easy to live with as it is now. That's a comfort only when I'm not hurting, of course. Anyway, it's not a hopeless situation and I figure I'll keep dealing with it. I'm blessed with very supportive friends and family. You have my best wishes. Stay with the site. Everyone's contribution helps someone else and can help you feel "empowered" and less afraid.
Mary
USA - Friday, March 02, 2001 at 22:20:12 (PST)

SANDRA IN UK-----------I, too have the pain points you describe your husband has. When my forehead or scalp hurt simultaneously (whis is unusual for me) I assume this is a tension headache on top of everything else. I'm glad it doesn't happen to me often. But if I develop a tension headache (rare, thank goodness because of all the meds I take for TN) I know I better pay attention and up my TN stuff or one of those buggers is gonna kick in. Good luck. I hope your husband will get involved with our site, directly. It helps me feel like I'm taking charge of the situation in some way. It's great that you're actively involved. It must be so hard to live with us, to watch us suffer and not be able to help other than remind us of your love. I hope this site helps YOU feel better, too.
Mary
USA - Friday, March 02, 2001 at 22:08:18 (PST)

Goodmorning to all. I do hope that you are not suffering to badly with the TN pain. I think that I have written in before about this but of course dont remember, does anybody get pains in their throat, almost like something is stuck in there but it is not. The funny thing is that my TN is on the left side but the pain is on the right side of my throat. It does not feel as if I am sick or anything like that just as if soemthing were stuck and I cant get it out. I know I have talked to people about that before and they said that they do have the throat thing but I wonder if it happens to any one else on the opposite side of the TN. Please let me know if this has happened to anyone else out there. HI CHAR> i hope that you are fine and doing well. Try to all stay as pain free as possible. Lisa
Lisa <lisae0608@aol.com>
phila, pa USA - Thursday, March 01, 2001 at 08:10:57 (PST)

Hi, my name is Vanessa and my mother has Bells Palsey. I am very worried for her because she has had it for over a year and she is experiencing a lot of pain in her ear. mouth, jaw and eye(only on one side). She has tried a lot of different treatements like medication, massages, even acupuntion. I just wanted to know if there are any good neuroligists or treatements that could help to cure her. I will be very happy to hear frome anyone-E-mail me at Galaxee22@aol.com
Vanessa <galaxee22@aol.com>
Kendall Park, NJ USA - Wednesday, February 28, 2001 at 13:22:24 (PST)

Char--How did it go with your MD? Most MD's are afraid to script methadone. My MD says it is the best. I go to a pain clinic. I had sight pain today , put some dentist gel on the trigger point, and it went away. Good luck to you. Therte is another web sight with MGH.mgh.harvard.edu/cgi-bin/forum. My best to you and everyone. Take charge of your pain Blair
Blair <K6egw@hotmail.com>
USA - Tuesday, February 27, 2001 at 20:28:33 (PST)

Hi everybody.I decided on my own to try and help myself,and others if I can.I have been doing alot of my own research,and I think some of what I have to share might help somebody,let me know via e-mail.........The Cranial nerves come down out of the back of your head and neck,and neck muscles over lap those.I have heard people asking if any body's neuralgia has been brought on by STRESS.YES mine has.The other day in the shower,I decided to use my shower massage because my neck muscles were SO TIGHT and sore.As the water hit the knot in my neck,I immediately felt the cranial nerve start to throb.(I have been almost painless for a week or so now.)I really am beginning to believe that if you can keep your muscles relaxed,you can help keep the pressure off of that nerve.It is a vicious circle,it seems,stress causes tense muscles,and pain causes more stress,causing tense muscles.I found a relaxation technique called Progressive Relaxation.I tried this for thr first time last night,and it really helps to relax the muscles.I was relaxed last night for the first time in weeks, months,my shoulders were completely loosened up!I am experimenting with this on my own,but I am going to keep doing this to keep the pressure off of that nerve,so the nerve can stop being irritated (inflamed?)and see if it will settle down,which in turn will stop the pain.I have heard that the nerve can heal itself on its own in between episodes.I'm not a doctor,just trying to see what works.Also,there is a nerve called the Vagus nerve which controls the nerve impulses to the heart and lungs,this nerve also runs along the same avenue as the Cranial nerves,and those tight muscles.Muscles need oxygen to function properly,right??? I'm just thinking that alot of this could be connected some how,and even alot of TMJ is caused by clenching the teeth and jaw together,hence tight muscles.Anyway,I might be nuts but I'm just trying to help us all.Even If I might not be on to something,all of us could use a little stress relief anyway.RIGHT??Let me know if this helps anybody.
Becky <devilfighter33@yahoo.com>
USA - Tuesday, February 27, 2001 at 14:05:51 (PST)

Hi there again, I have written previously about my husband. Has anybody experienced pain in two branches of the nerve on the same side i.e. above the eye and along the jaw line? My husband normally suffers under the mouth and along the jaw-line and has just developed this pain in the forehead at the same time as the other pain! I would be gratefull to hear from anyone who has. Sandra
SANDRA
LONDON, UK - Saturday, February 24, 2001 at 16:08:39 (PST)

Cathy.. I don't know of anybody's TN that has gone away for good. I have had mine for 5 yrs. I expect to have it for the rest of my life unless someone comes up with something new that works. Of all sufferers that I've read about and am in touch with, no ones has gone away for good. Different procedures have given some relief and some a remission for awhile, but TN always comes back. I'm not trying to scare you, but that is the reality of TN.
Char <schnauzersmom@aol.com>
UT USA - Friday, February 23, 2001 at 22:04:07 (PST)

I had MVD last year. TN pain returned. I have had Balloon Compression. Am wondering if anyone has had experience with Balloon compression or radiofrequency rhizotomy. I am also interested in side effects of MVD that others may have had. Please e-mail with info or if you would just like to share TN experiences. Thanks Brenda
Brenda <csours@aol,.com>
USA - Thursday, February 22, 2001 at 19:00:55 (PST)

Hello to everyone...!!! I haven't been here in awhile but thought that I should write to you all and let you know that my Mom is having the surgery. She goes into ST. Al's hospital in Boise on the 7th or 8th of March to have Microvascular Decompression. She is still really worried and still dosen't have all the information she needs but on her Pre-op appointment on the 5th she hopes to gain some insight about the surgery. I want to thank all of you who wrote to me and added your input and those of you who answered most of my questions about the surgery. It really help's to know that there is a support group for this hard time in my life. If anyone knows how long the surgery lasts or the recovery time for this please let me know. I feel very confused right now and I want so much to do something for my Mom but it seems that my hands are so tied up right now. My prayers go out to all of you who have had to go through this. May God be with you always. Trudi
Trudi <ezbnme27@aol.com>
Blackfoot, ID USA - Wednesday, February 21, 2001 at 10:17:52 (PST)

Mary, thank you so much for sharing the information about meds and the dentist. i guess i have to call mine tomorrow. can't put it off much longer. i'm sure all the meds i take have helped relieve some of the pain i would normally have with a broken tooth. i love this column. everybody is so willing to share. thank you all for that.
Char <schnauzersmom>
UT USA - Sunday, February 18, 2001 at 13:15:00 (PST)

I have to decide if I will have the cryo injections into the optholmic branch of the trigeminal nerve, the introrbital nerve.(I just lost a long disertation explaining my case, but I have horrible Photophobia and Dawn is coming very soon,) so I will not go on much more.Does anyone except Dear clarence, who sent me wonderful info,(if anyone wants to know about this they can email me,)does anyone have a success story about cryo distruction of the nerve?Katrina@macatawa.
katrina Wikstrom <katrina@macatawa.com>
Holland Mi, MI USA - Sunday, February 18, 2001 at 05:19:46 (PST)

I have trigeminal neurelgia of the optholmic branch ,the supraorbital branch.I have had this off and ond for 9 yrs.It is triggered by light.Thus I have to stay in the dark.light causes unbearable pain.The pain is always there once it begins, for months, but then it will finally leave, and i can be in the sun again, and always wear very dark glasses outside,this year the light on a dark day , with snow in Nov. started it.The only thing that helps is Neurontin.I have had 2 injections into the eye orbit, (it didn't hurt until the next day,)I got 1 day of relief from each of those.I was so hopeful.I am now considering cryo destruction of the nerve-I am a Nurse Practitioner and have lost $1000s of dollars in lost pay,and have become a hermit for long periods.A very heilful gentleman sent me a packet of info from pain med books outlining exactly what the nerve layout is, of the trigeminal nerve, ingreat detail,including where to place the nedles..Also an extreamly fascinating piece from the Lancet,1999,353: 22233-37, on the psysiological threat to the bodies integrity,named Suffering:the Contributions of persistant pain. I wish that I knew what to do.There are not really good statistics about the sucess rate of cryo-and many horror stories.It is still blessedly dark out, anfd with the neurontin I am fucntioning.In fact ,I was on call, but glad they didn't call>it is dark on the unit I work at, but with trying to titrate the Neurontin with pain, and the thought ogf driving home in the morning sun are horrifiying.My speling and typing are not good.Dawn is coming soon ,and I am afraid.Does anyone ever have sucess with the cryo, besides the helpful gentleman named Clarence who saw my posting and told me about the excellent material he sent.He had no more pain after 12 injections. I am glad, yet sorry for the others, that I am not alone. Katrina Wikstrom.God help all of the people suffering in the world, with all their maladies.It really makes you wonder.....
katrina <katrina@macatawa.com>
Holland 49423 USA, MI USA - Sunday, February 18, 2001 at 05:12:01 (PST)

Hello, schauzermom. I have a good dentist. I got my hands on one of the rare text books on TN. It was written by a dentist. I lent my dentist the book and he seemed very interested and admitted he was unaware of the extent of the problem. What do they teach these people in dental school? No wonder so many of us go through unneccesary, expensive, excruciating proceedures before a correct diagnosis! Anyway, I go to my dentist Monday for a crown. I've already asked him about a thing I read on a website (facial-neuralgia.com) that suggested several things. One is "Request your dentist use Marcaine without epinephrine as your local anesthesia. Marcaine is a lon-lasting anesthesia and should make it less likely you'll need many injections. Epinephrine is used to prolong the numbing effect of a local anesthetic but can also trigger nerve pai." Another thing it said was "Request you dentist inject the ansthetic as far away from any of your trigger points as possible." But in another place the same article said to do just the opposite, so my dentist and I will have to discuss that idea. It also advised taking meds as if you're already in an attack so they will already be in your system if the proceedure triggers one. Over-all, I found this site helpful on a number of TN issues. It goes without saying that you need to clear all this with your prescribing doctor before changing your meds routine. I took several sheets of info from the site with me to my neurologist last week and asked her questions about different meds and treatment ideas. Very helpful. Good luck with your dentist.
Mary
USA - Sunday, February 18, 2001 at 01:10:34 (PST)

Hi Mary Ann both my neuro and my primary have told me that generic tegrotol is not as effictive. i've found this to be true. i have some generic left and one day ran out of brand name. it worked so little, i had to take more for still not the relief.
Char <schnauzersmom@aol.com>
UT USA - Saturday, February 17, 2001 at 19:42:17 (PST)

Hello, everyone. I have a question for those of you who have taken Tegretol. I have been on the generic version for about 2 months now, 200 mg. morning and evening. It worked great for about 3 weeks, then the pain started to break through, just slightly at first, but now it's almost as bad as it was without any medication. I called my neurologist, who increased the generic Tegretol to 3 times a day (600 mgs. total). I mentioned to him that I had read (possibly in this guestbook) that the generic form of Tegretol is not as effective as the brand name. He replied that that is true with people who have seizure disorders, but it usually doesn't make any difference with folks who have TN. Has anyone found that the brand name Tegretol is more effective on TN pain??????? I really want to give this med a fair trial, but the neurologist said if the 600 mg. is not effective for me, he will try switching me to Neurontin. I'm really confused, as I've read that many people need to take much higher doses of Tegretol than 600 mg. to get relief. I'd really appreciate any advice anyone can offer. Thanks!!!!
Mary Ann <mahartzell@usachoice.net>
PA USA - Friday, February 16, 2001 at 17:38:39 (PST)

comments and questions.. 1st question: has anyone been to the dentist AFTER they were blessed with TN? i've had it for 5 years and have been able to avoid the dentist, but i broke a tooth, so now i have to go. Comments: Lisa, it's me, Char..yes, i have it on both sides, 1 side 5yrs, 2 sides 4yrs. have had decompression surgery on both sides. alli can say is that if it helped, dear God, what would it be without itd? i'm on so much medication the side effects are terrible..but NOT as terrible as the TN pain. i take it regulary, same time every day of my life. if i miss one, by 2 hrs later i've been reminded by my pain. acupuncture: i've tried it. very little, if no success on either, because lucky me, i have fibormalgia too. and also, it's expensive. most or no insurance will pay for it and most of us can't pay $50 - $60 everytime. I spent about $500. and gee, if you are at an acupuncturist office, how hard would it be for him to say 'you have pain'? i could do that. i was only going to write about the dentist this time, but with what i read, i had to comment. if you've been to the dentist, please email me or write here. thanks
Char <schnauzersmom@aol.com>
UT USA - Friday, February 16, 2001 at 11:43:37 (PST)

Sorry, Doug. But what you wrote sure read like an advertisement to me. And I don't like seeing something like that here.
Mary
USA - Thursday, February 15, 2001 at 22:43:43 (PST)

WE ARE NOT SELLING ANYTHING!!! “The Good Of Mankind” is absolutely the only reason. GOODNESS, TOO RARE A SERVICE TODAY! FIBROMYALGIA A woman we just met had a miraculous story! Acupuncture entirely stops her pain for three month renewable intervals! Each treatment cures for three months, then she just goes back and has it done again! Most fibro cases are different, but sheesh! The treatment takes an hour. She sleeps for four hours afterwards. THEN NO PAIN!!! Upon recieving such encouraging input we investigated further, to a place we had convenient access to. We found in the Yellow Pages: Accupuncture: Dr Ming Kui was Dr of the Year 1979 in China. He and Dr Lu Zhan (Pronounced Lu Schan, a woman) have a pain clinic but also successfully treat a huge multitude of radically bad ailments. We were both quite impressed by the positive and self-confident attitude there! There was a large reduction in fibromyalgia pain within the first 30 minutes, and there was also an herb mixture for eliminating the arthritis. This was the only relief she got in 8 years of searching! But oddly Sue stopped and , never followed up. Acupuncture, and herbal medicines are Chinese have worked on natural treatments for over 5,000 years! In true Chinese medicine they use over 5,000 different herbs. In US taught schools, only 400. A poor substitute! Arthritis is not a problem in China! Cure rate 95%! It is a huge problem here. Cure rate 0%! What absurd conceit makes you think that technology, combined with a profit making structure would do the same in the last 120 years? Dr Ming Kui, and Dr Lu Zhan are both at: 16425 S. Pioneer Blvd. Suite 104 NORWALK, CA 90650 562-402-6827 There are many different doctors, and not all will be able to help. So persistance will out. Good luck. FREE ACCUPUNCTURE ASSESSMENT “Some people are tired of alternative therapies and being conned all the time.” a quote from the Internet. I'm handicapped now, so I understand what you are implying. However, Q-10 garnered a Nobel prize when discovered. Since 1957 the medical profession has done an amazing job keeping this under wraps. After all, no sickness, no doctor bills, right? You are being sceptical in the wrong direction don't you think? I would suggest you read the articles with less prejudice and gain something incredible. About accupuncture. In order for one to succeed, firstly, going to non-China accupuncturists is definitely wrong. Chinese have been doing it for over 5,000 years. In America less than 20. Understand? And in order to succeed at something, fail with one, BLANKET CONDEM THE REST? CAN ANYONE SEE THE ERROR HERE? If one is going to do this, they must continue to look. What I failed to mention was, she succeeded, but not at first try. The doctor that successfully treated her was different than others. I suggest that you ask for treatment in this fashion. When the woman first saw the doctor, she was convinced. Upon his initial consultation he reached out to shake her hand. Before she told him why she had come for treatment he stopped her. "You have pain, and want to see if I can stop it." She was stunned! She knew that she had come to the right place! This is obviously the way to look. Just say that you want to talk to the doctor for seeing what his first impresssion is before scheduling an appointment. Insist that you are willing to be treated, if the conversation goes right. This way, you can look without charge. The right doctor will know. OK? Believe me, I know that everybody has alternative therapies that yield "amazing results!" What most of them end up doing is lining someone's pocket. If anyone wishes to submit this e-mail into any publication, go right ahead! My purpose to life is to help people, so you would be helping me! OK? INCLUDE THE FOOTER FROM THIS BOOK. http://64.176.111.58/maxpages/NOBEL_PRIZE_WINNER?stxt=fib
Doug Miura <gentlewar@yahoo.com>
long beach, ca USA - Thursday, February 15, 2001 at 17:57:35 (PST)

Hello Sandra in London! You asked if anyone has noticed a relationship between TN attacks and stress. I certainly have. Stress makes me tense my face, grit my teeth, chew my lips. I associate all this compulsive behavior with my attacks because it seems to aggravte the facial nervs. Of course, pain makes me tend to do all these things, also. So it's a vicious circle with me. Medication (Prozac for mood swings, Buspar for anxiety, 10-50mg for muscle tension as needed, even 3 or 4 valiums per month) has helped me manage the stress triggers. There are other factors, of course. And I take other drugs (seizure meds). I wish I could say I can handle TN without drugs but that's not the way I am. Exercise, prayer, and distraction can only work so much. The meds are my big guns. No surgery, so far. I hope your husband finds relif soon and you can keep your lives going ahead. Sometimes I avoid challenges because I'm afraid of setting off an episode. Sometimes I hurt in a dark room or hurt doing what I want to do. There's always the option.
Mary
USA - Wednesday, February 14, 2001 at 23:22:52 (PST)

Dear fellow TN sufferers... I am starting a support group here in Arkansas (North Little Rock). If you are in the area and would like to help by attending a meeting or two, please email me. I have lined up a couple of interesting guests. One of them is a Doctor who has had TN since 1988 and has some insight into how he has coped with this since then. Again, please contact me if you are interested in attending or helping to plan with the meetings. They will be held at Memorial Hospital in N. Little Rock. Thanks and God bless you all. Have a happy and pain free Valentines Day. Jeanne
Jeanne <JVHyde@aol.com>
NLR, AR USA - Wednesday, February 14, 2001 at 15:35:12 (PST)

I have TN. I just developed the classsic symptoms over the last year. I'm considsering surgery. Any thoughts? Bonnie Adkisson
Bonnie Adkisson <badkisson@mindspring.com>
Birmingham, AL USA - Tuesday, February 13, 2001 at 09:25:38 (PST)

Hi, my husband is a TN sufferer. He had TN for 2 years whilst the dentist extracted 5 teeth and gave him 3 lots of root canal treatment as well as charged lots of money for this unecessary treatment. He lost lots of weight and our home/family life suffered considerably before we visited an emergency dental clinic and a 'trainee dentist' spoted the symptoms. Therein he was very lucky in the respect that the consultant and staff took his pain very seriously and he was so bad the only time he could eat was after a local aneasthetic was injected directly into the nerve via the mouth, which he would have every time he went for an appointment, Tegretol had no effect on the pain, but gave him tunnel vision. Soon he was to have the decompression that left him pain free for 4 years. Alas, it's back! Can you imagine his dismay/our horror that the pain had returned. Currently he is the cause of much interest as we try to work out our next move. When it returned we were planning a house move. We panicked and cancelled our plans to move and the pain left for 1 year, we are now moving in 2 months and he is suffering again. I know there are trigger points and trigger things that start the pain, but I would be interested to know if anyone thinks their pain may be remotely stress related? Wishing you all a pain free night. God Bless. Sandra
Sandra
London, UK - Monday, February 12, 2001 at 17:48:35 (PST)

hi, anyone that can help please email me, while taking a shower felt a weird stabbing like sensation in my right nostril, went to bed that night and woke up with the most excruciating burning pain going from my nose to the eye socket and the right cheek. got it again when i touched the nostril. two days later went on antibiotics for seven days and it worked. after stopping the antibiotics two days later the twinge came back. gradually got worse. now i get a quick one second electric shock in the nostril when i swallow a certain way or bite down. did i damage the nerve by waiting two days to go on the antibiotics. the doctor said my nostril is inflamed, very red, wednesday i am going to an ear,nose, and throat doctor and getting a ct scan. my question is if it is trigeminal neuralgia why did the antibiotics clear it up in the first place. and why i is the pain not spreading and just sticking in the nostril.thank you for your help
joe gint <interdigital99@hotmail.com>
USA - Monday, February 12, 2001 at 01:04:54 (PST)

This is my second entry in this guest book. My first, was on Oct.22, 2000. I may have found something that might help at least some of you TN sufferers. I have refused all medications, and will not have an operation. However, I have tried many other possibilities, including massage, acupressure, Capsaicin creme etc. I could not continue with capsaicin because it did not dry well on the skin and when it smeared on the pillow, my eyes would burn too much. One day, my husband read an article about acupress, a topical analgesic/counter irritant, which, according to the doctors, is : acupuncture without needles. What I like about this is that the bottle has a little roll on top. the liquid is colorless, non greasy , it dries quickly, much like alcohol but it feels like ice and smells like menthol. The cold feeling lasts a long time. I put it on before bedtime, at the base of my scull, at my trigger point, in front of my ear, at the temple and in the middle of my forehead. After a month of treatment, I dont have to stop talking while having an attack, because it is soooo mild ; I dont have to hold my breath during an attack, the burning is very minimal and the stabbing is almost a joke. I dont know if this releaf will continue. Two days ago, I stopped using this medication and if the unbearable pain returns, I will know for sure that this topical analgesic does wonders for me. A booklet containing information on how to use it, comes with the medication. Some of you, might want to try it. God bless. Julie
Julie <Giuval_2000 @yahoo.com>
N.Y. USA - Sunday, February 11, 2001 at 13:27:24 (PST)

Hello to you all. My Mother was diagnosed with Trigeminal Nuralgia and has been on medication for quite awhile now. Needless to say the medication's are not working for her. Her Doctor has scheduled her for surgery the first week in March to do what is called Microvascular Decompression. She is in severe pain and she tells me it is by far the worst pain in the world. We still don't know for sure everything that will go on with the surgery. We have so many questions. I would like to know for one thing just how long the recovery period is after the initial surgery. She will be having the surgery at St. Al's hospital in Boise. I am so scared and with everything I have heard I have to say that I am scared of loosing my Mother. Any and all information you have to send me would be greatly appriciated. All my prayers go out to you all in this very hard time. God bless..!! Trudi
Trudi Putnam <ezbnme27@aol.com>
Blackfoot, ID USA - Sunday, February 11, 2001 at 03:21:27 (PST)

Hello, I am not very happy right now. I have the TN on the left side of my face and guess what? I now have it on the right side. Tonight when I was out I could have died, I got multpiple shocks to my jaw and my ear and part of my cheek. I have been getting little twinges on the right side but nothing major and tonight, well now what does this mean, is this going to be forever on both sides or does it stop and stay on the left side where I have had it for a year? I cant fuction with it being on both sides. One side is bad enough, but both, I could not even stand up I had to stop in the middle of the street and could not move. What I want to know is has this happened to anyone else and if so what can I do? I cant take this. please give me some information and let me know what is going on. thank you in advance for your help. Lisa
Lisa <lisae0608@aol.com>
phila, pa USA - Wednesday, February 07, 2001 at 18:48:15 (PST)

Hi Everyone, it's me again. I feel a bit better than when I wrote in here last week. The pain is easing, and I feel like the second Ganglion Block is working. I'm scheduled for the third one in 3 weeks, really not looking forward to it, the procedure is so painful. But I DO however want to give a good word to anyone else that is thinking of undergoing this procedure...."three procedures times 30 seconds of horrible pain, it's well worth it for a chance towards 5yrs or possible a LIFETIME of being pain free" I'm always wanting e-mails from anyone else with Atypical Facial Neuralgia. God Bless you all and keep you in His prayers,
Marilyn <corkyham@hotmail.com>
OH USA - Monday, February 05, 2001 at 20:49:22 (PST)

In the past couple months I have been diagnosed with both trigeminal neuralgia and fibromyalgia. I could probably lead a productive life with just the fibromyalgia but the trigeminal neuralgia has been devastating. The pain usually begins 2-3 hours after waking and intensifies throughtout the day until I have what I call a meltdown, I just sit and cry. I first saw about 4 different drs. who treated me for allergies, sinus infections, rhinitis, etc., until one of them sent me to an ENT specialist who immediately diagnosed the trigeminal neuralgia and sent me to a neurologist and although I believe she is trying I don't think there is any real good answer to this affliction.She has tried me on Trileptal which made my face swell up and look like I had a very bad sunburn. She also had me on Zanaflex which is a muscle relaxant because the pain in my face made me guard the muscles in my neck and shoulders and I became hunched over like an 80 year old lady.I also took Tylox for the pain which has basically not even begun to relieve the pain. After the Trileptal experience I was prescribed Topomax which gave me tingling in the hands, jitteriness so that I was unable to fall asleep even with taking Ambien, loss of balance, problems with speech and memory and vision changes. I am currently aalso in physical therapy where they are working on the indise of my mouth to help the jaw muscles relax, and also see a chiropracter and have even tried acupuncture but things seem to actually become worse. I had an episode of this back in 1989 and lost a whole summer but then it subsided and then in March of 2000 it began again and has persisted until now. I know some have had the decompression surgery and that there is a dr. at St. Lukes in Milwaukee which may be my last option. I would welcome any suggestions. I also have begun taking B12 and using Zostrix which is a topical analgesic but so far nothing has seemed to help. After 16 years working in state government I had to quit my job and have applied for SS disability whichbecause of my young age so they say there is only about a 50/50 chance of receiving it. Has anyone else been successful in this area? Kat
Kay Javenkoski <threelakeskat@hotmail.com>
USA - Saturday, February 03, 2001 at 09:47:54 (PST)

I had severe reaction to Tegretol, my blood pressure went so high after only the third pill. Lucky for me I had heard people say they felt pressure in the top of their head when blood pressure was high. Now am afraid of all medication for TN. I suffer through the pain. Had root canal therapy done on Tuesday, then on Wednesday Night, I really suffered for about 5 hours. During this time I walked the floor and cried. I would have had anything done during these hours. This was the worst pain in my 5 years of TN. Has anyone else had blood pressure problems with any of the medications?
M Jones <mjones@bayou.com>
USA - Friday, February 02, 2001 at 21:31:12 (PST)

TN & TMJ 28 yrs old mother of two small children have not yet found the right treatment for relief./
Jennifer Walsh <jw99ny@yahoo./com>
Middletown, ny USA - Thursday, February 01, 2001 at 22:17:35 (PST)

Wow! I stumbled on your awesome website by accident! I too have lightening bolt facial pain! It began after a root canal and comes with changes in the weather. cold weather especially. I cannot tell you just how comforted I felt after reading all your comments! I am not crazy! The pain is swift, hot, electrical in nature and hurts beyond description. I too have had two sinus "cleaning" surgeries, taken tegretol, neurantin and with no relief. I can go months without and episode and then, wham! without notice it's back! I have found alot of relief with decongestants, actually they have stopped the pain when the high powered meds didn't even touch it. I have to get to bed now. But thanks for listening, I'll be visiting again. I am so sorry that you all are in such pain, my heart breaks for you because I have suffered this debilitating, sometimes life threatening pain ( I could not eat and lost 18lbs. prior to surgery!) Hugs to you all, Debi
Debi <napzok@pacbell.net>
USA - Wednesday, January 31, 2001 at 23:20:22 (PST)

Hi everybody, its me again. I never had a chance to read some of the letters you all have written.My heart goes out to all of you...what a wonderful thing to know I am not alone anymore.I feel humor,because I also have had a tooth YANKED believing that was the problem,(Thank God I figured it out before I became toothless LOL) I've also experienced the visual blurring to the point where I could not drive.I want to write to each and everyone of you,even if it is just to comfort you,but I'm on limited time at the library.I will however be praying for everyone,and feel free to e-mail me at anytime.See ya Becky
Becky <devilfighter33@yahoo.com>
USA - Wednesday, January 31, 2001 at 13:46:17 (PST)

Hello Everyone! I just yesterday underwent my 2nd Stellate Ganglion Block in 6 wks time for my Atypical Facial Neuralgia. I was on Tegretol, it did nothing for my pain. After almost 3 yrs, I finally got my insurance to pay for me to see a pain management dr. He switched me to Neurontin (2400 mg per day) and I was 90% pain free within a month. Since my first block on Jan 11th, I've had only about 4 days where I've needed any pain med. My main question is, even though I am almost free of pain, my dr. is still wanting to do a 3rd Stellate Ganglion Block 4 weeks from now. I am wondering if anyone else has had this series of more than one block done for Atypical Facial Neuralgia, and if so, what is the pain free time gained between having one vs. any additional blocks. The one yesterday was SO painful, I am just wondering if having a 3rd one done will be beneficial. Please feel free to e-mail me with your helpful hints or suggestions on having more than one SGB done in such a short period of time. God Bless you all, and my your pain be less each and every day. With God, all things are possible for those who believe.
Marilyn <corkyham@hotmail.com>
OH USA - Tuesday, January 30, 2001 at 14:17:19 (PST)

Becky, I was diagnosed with TN two months ago, although I have had the pain for a few years now. I am glad I found this site and read your entry today. I was trying to find some information about TN because recently I have been experiencing some mental confusion, and blurred vision. I am not sure if the new symptoms are being caused by the TN getting worse or the med I am on. I am taking Nurontin. What med's are you taking? If you or anyone else wants to talk or has any information that can help me please email me. Thank you
Ali <allsunshine@aol.com>
OK USA - Tuesday, January 30, 2001 at 11:40:45 (PST)

Hi,this is the first time I have visited any sight on Trigeminal Neuralgia.I was diagnosed with this about 15 yrs ago,and had one serious bout which had me bedridden for about a month because the Doctors I was dealing with were idiots.Since that time I have had several minor bouts with it,with mild pain.I have several questions about this disease.Does anyone get "over emotional" while going through an episode of this,or experience mental confusion?? I was amazed to find out that blurred vision was a part of this.I had some doctors that wanted to put me in a psyc. ward because they thought I was nuts,and or imagining the blurred vision.I would be grateful for input,regarding all symptoms people have experienced.Thankyousomuch.Becky Forthman
Becky Forthman <devilfighter33@yahoo.com>
USA - Monday, January 29, 2001 at 14:11:33 (PST)

My pains have been kept fairly well under control for the past month since I've been taking Tegretol, except for an occasional jab. Yeah!!!!! Now I'm writing to ask for feedback for a question that I have. Here's the scoop: I have a white filling in one of my top teeth that is visible when I smile. The filling was put in several years ago but has gotten dark with time, and I'm very self-conscious of it when I smile, as it is very noticeable. At my routine dentist appointment yesterday, the dentist was very willing to replace the filling because of the way it looks. My only reservation about doing that was my fear that a novocaine injection into the nerve might flare up the TN again. The dentist couldn't give me any reassurance that that would not happen, so I opted to leave well enough alone, as much as I hated to. I have read many stories here that attribute the original onset of TN to a root canal or other dental procedures. What I am wondering is, has anyone had something as minor as a filling or novocaine injection cause a flare-up of an existing case of TN? Any feedback would be appreciated!
Mary Ann <mahartzell@usachoice.net>
PA USA - Friday, January 26, 2001 at 20:03:47 (PST)

Through the TNA office, I have information about a drug called Trileptal. Has anyone out there used this drug? My doctor is getting close to rxing TEGRETNOL, and I am wary of that drug. From what I have heard about it, it should be called REGRETALL.
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Friday, January 26, 2001 at 09:14:57 (PST)

I have been on neurotin 300 mg a day for over a month. Has anyone experienced weight gain with this drug?
Gail <cameron1298@yahoo.com>
Temple, TX USA - Wednesday, January 24, 2001 at 17:43:14 (PST)

I JUST STARTED TO SEARCH THIS PROBLEM WITH MY TEETH BREAKING AND HOPING I WILL BE ABLE TO FIND OUT MORE ABOUT IT. WHAT IS CAUSING THIS FROM THE PREDNISONE
ARLEEN fINGER <mnviking@xenic.net>
Sacramento,, ca USA - Monday, January 22, 2001 at 09:29:16 (PST)

Goodmorning everyone, I have a question to put out to everyone>>> I have noticed that since the dx of the TN and the taking of the tegretol and the neurontin my vision has been horrible. During the time that I was taking the tegretol and the neurontin, I had very frequent episodes of double and triple vision making it almost impossible for me to really see anything. I had one day where I was fine when I left the house and then about 1 hour of being out, I could not see, my vision was so bad and it was double and triple. I had to drive home with one eye open and the other closed just so that I could maybe see enough to get me home, I weaned myself off of the neurontin thinking that was the problem and since I did that my vision has been somewhat better, the thing is that the other day, I took my tegretol, same dose and all and about 1-2 hrs after taking it I could not see anything again, I was going to go to the hospital but then I figured what were they going to do , I know that it is the medicine doing it. Has anyone out there come across this problem and if so please let me know what you have done to possibly fix it. It scares me, I have 2 young children and there are lots of days where I am the only one home with them and to not be able to see is not a good thing and it also happens without warning when I am driving, I cant stop driving, I need to get my kids to and from school. Please if anyone has had this please let me know what I need to do. I am going to call my neuro today but I rather hear from people who actually have it and understand. Thank you and God bless you and keep you strong. Lisa
lisa <lisae0608@aol.com>
phila, pa USA - Monday, January 22, 2001 at 08:04:36 (PST)

This is Don Williams, Lewisville, Texas. I have crossed a threshhold. About seven weeks ago my pain began crossing from my left side to my right. I would sometimes get a stabbing above my right eye when the stabbing occured over my left eye. It has taken seven weeks, but now the right side matches the left. Both sides, from the medulla to the nose, both trunks, all three branches of each. Stabbing, pushing, burning. I did not know it could get this bad. Is there any dependable way to stop the failure of the myelin? Is there any dependable way to replace the myelin? I have looked at the success some are having with diet, and the sum of the evidence seems to indicate that stopping this thing by diet is a highly individual contest. Well meaning listers have recommended opposite solutions. For lack of a better guide, I am trying to follow the recommendations of "Eat Right For Your Type" and "Live Right For Your Type" believing that the solution must be found in working with the individual's body chemistry. I have been out on the web and can find no significant medical system researching this problem, or any dependable medical solution. I am going to start contacting medical universities hopeing to find some individual medical researcher working on this problem. I have long suscribed to natural solutions, believing that Gog gave us good bodies that if given the opportunity, will heal themselves. Any knowlwdge out there, please share. Thanks, and God bless you. WE CAN, WE DO, OVERCOME!
DON WILLIAMS <donwilli@flash.net>
LEWISVILLE, TX USA - Sunday, January 21, 2001 at 11:13:16 (PST)

I HAVE HAD TWO ROOT CANALS AND ONE EXTRACTION WHEN ALL ALONG I HAVE BEEN SUFFERING WITH TN. I AM JUST THANKFUL WE HAVE GOTTEN DOWN TO THE PROBLEM. I CAN RELATE TO EVERYONE'S STORIES. THERE FOR A WHILE I THOUGHT I WAS GOING CRAZY!!! MY DENTIST HAD NO SYMPATHY FOR ME. I KNOW THE PEOPLE AT WORK ARE TIRED OF HEARING ABOUT MICHELLE'S TEETH. I HAVE NEVER EXPERIENCED ANYTHING LIKE THIS. I TO HAVE HAD 3 CHILDREN AND I HAVE ALWAYS RELATED THIS PAIN TO CHILDBIRTH. NO ONE COULD EVEN IMAGINE THE PAIN I HAVE BEEN IN FOR THE LAST THREE MONTHS. I HAD AN OUTBREAK 1 YEAR AGO AND HAD A ROOT CANAL AND SHORTLY AFTER THE PAIN WENT AWAY. BUT THE PAIN WAS JUST AS SEVERE AS I AM HAVING NOW. MY DR HAS PUT ME ON TRILEPTAL 300 MG, PREDNISONE 20MG. I HAVE JUST STARTED TAKING THE MEDICATION YESTERDAY. IF ANYONE HAS ANY COMMENTS PLEASE REPLY. MICHELLE
MICHELLE <FMLINDSEY@YAHOO.COM>
CEDAR HILL, TX USA - Friday, January 19, 2001 at 10:34:39 (PST)

Hello Karina. I know about that pain behind the eye. Mine also goes down my jaw and neck. Neurontin, baclofin & tegretol help reduce my attacks and can often make them less intense. Neurontin, even in relatively small doses, makes me a little drunk and sometimes hyper. I take it only at night and then stay up too late, like tonight. A pending attack sometimes makes me hyper, also. Hope that's not coming on! Have you seen a neurologist? Sounds like you're being treated by only opthmologists.
Mary
USA - Tuesday, January 16, 2001 at 00:30:47 (PST)

I was diagnosed with TN shortly before Christmas. I was having pain in my ear which was attributed to fluid in the ear because of allergies. My family doctor sent me to an ENT who put me on antibiotics which had no effect. After a negative CT scan I was put on Tegretol. My family doctor thinks 6-8 weeks of medication will be enough. I would like to know if anybody else with TN has had success with this and if the pain did or did not return. Thanks
JANICE <rcollins@mlecmn.net>
Aitkin, MN USA - Monday, January 15, 2001 at 17:25:19 (PST)

Don, thank God i read your entry today. i'm on neurontin, 2400mg day. i twich all the time. i was scared. my family history has parkinson disease. my Dad had it. i can't remember what someone says while tey are talking to me. sometimes i sit at the keyboard trying to remember how to spell a word.. and trying to find the right key to tyep. i call myself brain mooshed. this doesnt have spell check so i hope thsi is not too bad. also, i get dizzy spells, right now in fact. i can't drive because i never know when they will appear. i have had 3 decompression surgeys. in 5 uyrs i have had no pain free days. are you newly dislectic? with numbers and letters? i don't let all my symptons out at once. i wait and see if someone puts in one or to more. if i spilled everything at onec NO one would believe it. email me if youd like.
Char <harleysmom@yahoo,com>
slc, ut USA - Monday, January 15, 2001 at 15:53:54 (PST)

Just want to update on my TN experience. Had MVD this last year. Was pain free for 3 months. Tic pain returned. Have had 2 Balloon Compressions. Each gave short term relief for me. I really can relate to horrendous TN pain. I am interested in corresponding with others who have had MVD and their TN pain returned. What other options do I have? It really helps to know there are many others who understand TN suffering.
Brenda <csours@aol.com>
USA - Friday, January 12, 2001 at 18:07:08 (PST)

I am typing because a kind man who knows this site, read my information on the facil pain site or the Trigeminal neurelgia site and since my pain is in my eye,,off and on for almost ten years. I was dismissed as maligering and treated with concern over those yrs.I am a medical parson myself, and have had to be off work when the pain, which began with a viral infection in 91-92,is triggered by light -I have stayed in a darkened room with blankets over the blinds and cutains, taped to the wall for months.I love the nightime ,because the light is less, and then the pain is too.I have been on Neurontin about 2400-3000 mgs when this pain which is srange because I can be in the sun with my very dark glasses, sometimes, especially in the summer,then in the spring and fall it will hit,and I will be off wok and cinfined tothe dark for wks to months.The U of M felt it was Post herpetic(Zoster,)but when I arrived there, I had not had the pain for weks, and was fine.and they went by my opthalmologists tentative dx,because he was a Fwllow there, and had been on staff.He had been kind to me.Some, who could'nt find out what was wrong,made me feel that Imust have been maligering.That was horrible-what would the 1st or 2ndary gain be for such a thing.Last week ,or was it the week befr, I(the Neurontin plays havic with my memoryI had a nerveve blockat the pain clinic- it did not hurt to have it done , but as it unthawed, it hurt.2 days later, the pain was gone-comlpletly ,even with a lower dose of nuerontin.The next day ,it was back, alongwith a pain one would expect from having the nerve in back of ypour eye peirced, even with a size 27 needle.The neurontin didn't help this ,"inflamed ')ssort of pain, and I called foraRX for Naproson,(Aleve,)500mg ,which is helping .I was rather taken aback that I had still another problem that was unual-(I have Common Variable Immune Deficiency.)a lack of anti bodies, so one is particularly sensitive to viruses and encapsulated bacteria.)I used be able to get gamma globulin, which is the TX if choice, but Itake a lot of anti-biotics-no antivirals-my condition is not catching.-anyhow, it is possible that the virus I had in 91-92 settled in the nerve behind my eye and in the let side of my eye-I'llnever know since the doctor I went to then , some big shot now retired, first thought I was afflicted with a virus,gaveme anti virus drops and as I didn't better, told my doctor that I must b embelishing the problem.I was sitting in my good doctors exam room, and heard my doctor through the wall defending my sanity and general good breeding, since I had gone to him so long, and never exibited any strange behavior or thinking.I was angry, but since than have felt somehow that it was my fault!That if I just tried harder, it would go away.(I shouod have thanked that good doctor for his support-I had so much pain that day, I had to hav ethe lights off and ice on my eye.I have since moved and the doctors I see the same people I work with.The attitude of medicin towards pain is slowly changing.I live in a Calvinist area,of which their is no other so strong! This , and the American outlook of ,"be tough"hopefully id changing,'I am rambling-Has anyone elese found that Neurontin causes increased hunger and a tendancy to talk more and forget things? Well, I hope all these peopl are better by now,since their dates of entry are several yrs old.Are there any new pages.It is nice to know you are not alone, butsad to read of the suffering. Katrina@macatawa.com
katrina Wikstrom <karina@macatawa.com>
Holland, MICHIGAN USA - Friday, January 12, 2001 at 16:23:43 (PST)

Thank you for providing such a wonderful support group and learning tool for my patients! I, too, learn from the comments and experiences of so many people with TN.
Ethan Janson DDS <ejanson@seattle-dentist.com>
Seattle, WA USA - Friday, January 12, 2001 at 15:10:12 (PST)

I need to have a referral to a neurologist. I have seen 4 since a car accident 4 years ago. I have been diagnosed with 4 different conditions. I need to have a second oppinion. Who would be the best nuerologist in the USA for post concussion syndrom? I will travel to where ever, please advise!Thanks <><
Sandy <Dsgarner5@aol.com>
Carmi, IL USA - Friday, January 12, 2001 at 10:15:03 (PST)

Response to Lisa: I have had the twitching of legs, arms, hands, and fingers. I do not know if the spastic like movement is connected to the medicine or to the condition. It does seem to come on with pain spikes and ease as my medication takes effect. (With enough medication, all movement will cease.) I am on 2400 mg of Neurontin, up to 3600 mg as needed. This week my pain has been elevated, and I have been getting 3000 to 3600 daily with Darvocet last night and this morning. It will sometime take me an hour to type a sentence. This is from making mistakes as well as trying to think of the words. I am highly medicated this morning and things are folwing better, though not normal. I had my lower sinuses removed about 14 years ago. There is still infection in my lower face. My Radiologist said that the long term sinus infection I have been carrying (20 years+/-) had caused Crainal Neuralgia - loss of myelin - which had contributed to my ATN. (Tumors, arterial, and vienal causes have been eliminated by drug trials and tests.) So, the surgery may have contributed, by removing the natural system that was supposed to drain away the infection, rather than leaving it in my face. I still believe we can over come this condition. I just don't know how. Keep your attitude positive.
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Thursday, January 11, 2001 at 11:15:31 (PST)

I would like to know if any one out there has Trigeminal Neuralgia as a result of dental work. If you do would you please e-mail me and let me know. I had dental work done in Sept. and have been in pain since. I have been told by a Neurolgist that I have Trigeminal Neuralgia. I have been on Neurotrin with no luck, now I am on Tegretol and it does not seem to help. Please let me hear from you because I feel like I am going crazy.
Mayon McClendon <MayoungMcClendon@aol.com>
Ms USA - Thursday, January 11, 2001 at 10:06:36 (PST)

Hello everyone, well I am not sure where I should start, lets just say for 11 days into the new years it has not been that great, I spent new years eve crying fromt he pain and then on Jan 3 I found out that they were cutting my position and that I had not job, great new year HUH? Well anyway, the latest thing is my vision, it is horrible, there are days when i have double and triple vision and that i feel like i am going to fall down just b/c my vision is so bad. I had my vision checked about a year ago and it just seems to get worse and worse.Well as for the pain, I am not sure if the meds even work anymore but I know that when i stop them the pain wil be back like a vengence and will knock me to my knees. I had a job interview yesterday afternoon and i felt so stupid, i could not even remember the words to some things. I mean like simple things that anyone should and would know. Well today the pain is not that bad but I know that when i go outside it gets ugly. I am taking 40mg of oxycontin at night before i go to bed, just so that i can not have some pain for a little while. All I know is taht i am so tired anymore that if i could spend every waking minute in my bed then I would. My eyes just feel as if they want to close. Question for all of you out there, do your hands and legs and arms twitch from this medicine? Therer are days when i am trying to type that my hands just jump off of the keyboard, it is so annoying trying to do things and my hands jumping off the board. I am os happy that this web site is here because i have met some great people on this site and with out them I am not sure where i would be. they are teh only people who really and truely know what we are going through each and every day. Everyone hang in there and stay pain free as much as possilbe. Another last question, has anyone ever gotten this from sinus surgery? If so please write to me and let me know. Lisa
Lisa <lisae0608@aol.com>
philadelphia, pa USA - Thursday, January 11, 2001 at 09:38:39 (PST)

I Would like to respond to some of the negative comments on the MVD surgery. I have had two MVD surgeries, and can relate to the negative comments, but I must say that since my second MVD operation I feel great. The first operation was done by a Neurosurgeon who did not explore far enough down to the Brainstem and missed quite a bit. Two arteries and some blood vessels. I really believe that it is not the MVD surgery that is the failure but the abilities of Neurosurgeons who are limited in what they can or feel comfortable doing. It is so important that you ask alot of questions, do alot of research and find out the success rate of the Neurosurgeon that you are going to. I went to see Dr. Peter Jannetta for my repeat MVD and he is wonderful. Dr. Jannetta is very kind, he does not make you feel as if you are "crazy". TN is a horriable thing, but be assured that there is help out there, just be careful who you trust.
Theresa Watral <tmcw67@aol.com>
OH USA - Tuesday, January 09, 2001 at 22:28:37 (PST)

I would like to let people know that there is help out there for TN. I have had two MVD surgeries and one surgery for Hypoplastic Posterrior Fossa. My first surgery was done my a Neurosurgeon who did not do the job. I went to see Dr. Jannetta who did two of my surgeries and must say, he is wonderful. For those who suffer with TN, there is hope. Keep the faith. I had a repeat MVD by Dr. Jannetta and he found things that were missed from the first one done by another Dr. I feel better now than I have in a long time.
Theresa Watral <tmcw67@aol.com>
USA - Tuesday, January 09, 2001 at 21:38:09 (PST)

I was diagnosed approx. 4 weeks ago after I called in a dentist on a Saturday morning who subsequently called in an endodontist on a Saturday morning who sent me to the emergency room in an ice storm who wrote me a prescription for Tegretol. My pain began in my lower right teeth after some minor dental work (fillings). Even after diagnosis, I could not and still cannot fathom a lifetime of this extreme debilitating pain. Prior to my medication "kicking in" and after 4 shocks waking me up and having me in a "pain puddle" on the floor in tears, I was having my first ever thoughts of suicide. Those passed quick enough when the Tegretol kicked in; however, an allergic rash prevents me from taking any more of my miracle drug. I have since had allergic reactions to Trileptal and now I am on Kappra (but the pain is getting worse and sometimes I increase my dosage without doctors permission). I would like anyone out there who has been struck by this lightening to email me with their personal experiences with microvascular decompression and with gamma knife as I want to have a pain free life and am willing to try something other than medications which don't work or that I am allergic to. I am so very hungry and can't eat but small amounts. I am tired from waking every night with this pain from the lightning bolts. I am a believer in God and good people and hope that someone elses story might save my sanity and provide me with the information I need to make a quality surgury decision. NOTE, does anyone know how much MVD costs? Round about figures would be nice. Not that cost is a concern right now, a pain free life is my ultimate goal. Thank you in advance for emailing me. Jeanne
Jeanne <jvhyde@aol.com>
AR USA - Tuesday, January 09, 2001 at 16:27:45 (PST)

My neurontin dose has been advanced to 2400mg daily, more as needed up to 3600 mg daily. I picked up here on the site that taking addditional neurontin when a pain spike starts can be helpful. I find it is. I also find that it's more often the pain that makes me stupid, not the drugs. Yes, sometimes the pain makes my speech falter, and my writing take hours, but when it is finally relieved by the right amount of drugs, things sometimes level out. One problem I cannot understand is the pain associated with trying to read. I need to read, lots of pages, but find I have to shift my eyes away every few moments, and that enough reading brings an increased pain level to my eyes. I've had my glasses checked, and have a new prescription. Any experience on this?
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Monday, January 08, 2001 at 08:14:05 (PST)

Thank you for such a wonderful web site and all the wonderful info. I have been dealing with TN for eight years and have had two gamma knife operations. I had reverse outcomes from both operations. I was worse after each operation. My doctor is againstany other] operation. He said there are not any operation he would recommed except the gamma knife. The others are operation that do not last and the pain does come back. He has me on oxycontin 20mg 1 in the morning and one at night and Topamax 100 mg in the morning and 75mg at night. Now I have a nasal spray I keep with me at all times called Stadol NS 10 mg that I use if I feel bad pain starting. I spray that side of my face and it deadens that side. We started this about a month ago and so far it has been really great! Stops it cold! I hope this helps.......
Louise <wezzo@flash.net>
Atlanta, GA USA - Saturday, January 06, 2001 at 08:50:58 (PST)

I extend my deep thanks to "Mary" and "Kathie" (2 generous, caring saints) who shared such great information with me by private email after seeing my message on this list. Here's some comforting news: Mom's dentist is one out there who actually knows all about TN and knows folks who specialize in it! Better news is that Mom is not going to rush into surgery or other drastic means. I've sent her good information I've received from Kathie and Mary and will soon order the TNA book. We're also looking into Dr. Day's health and curing TN through good nutritition (eliminating gluten and watching that dairy and sugar). Also, through the TNA site, I found support group contacts in St. Louis. Thanks for this great chat site, Debbie!
Marsha Clark <mkclark@mo.net>
St. Louis, MO USA - Thursday, January 04, 2001 at 21:03:03 (PST)

Thank you for the website. Sometimes people think TN is not real ("oh, it's just in your head" - HA HA!). It is very comforting to know that there are others out there who have suffered as I have and know that my pain is real!!! I have given birth five times and there is no comparison to the pain of TN. Thank God I have found relief with medication, but there is always the fear that the pain will return!
Laura
GA USA - Wednesday, January 03, 2001 at 11:46:46 (PST)

My mother is suffering from TN; it was rather infrequent in past years, but recently developed to several times a day; she's seeing her dentist Thursday. However, I'm looking for better advice than what may come from her dentist. Is there anyone out there who can recommend a good doctor in the St. Louis, Missouri area?
Marsha Clark <mkclark@mo.net>
St. Louis, MO USA - Tuesday, January 02, 2001 at 21:18:01 (PST)

I was diagnosed only one week ago and am afraid and confused. So glad to see there is so much support out there!
janismarla ringel <janismarla@earthlink.net>
USA - Tuesday, January 02, 2001 at 19:07:59 (PST)

This is my second entry since I found out I have TN. I could cry when I see all the people here suffering with TN. I have been on Tegretol, but had bad side affects. Now I am on Dilantin.So far no side affects, but I am still having episodes of pain. Since I have acute TN, I have pain at all hours of the day and night. I even wake up out of my sleep to the pain. I can go days, or even weeks without pain. I then think that I could maybe "handle" it. But then I have an attack and I am totally paralyzed until the pain subsides. I haven't had an MRI yet because my insurance co. won't pay for it until medicine therapy has been tried and failed.I had a cat scan in '97 for unexplained vision loss. so the God almighty ins.co. said, since that came back negative they don't see the need for an MRI. Amazing how they can play God with our lives, isn't it? Judy
Judy <tjloest@hotmail.com>
WI USA - Monday, January 01, 2001 at 10:35:12 (PST)

Helloe my name is Rod and i have tn.I have had this condition for ten years and it has wrecked my life but we still go on. in the past ten years i have had nerve sections ,nerve block injections and two years ago vascular decompression ,none of which has worked. but i now have control over it by taking morphine as a long acting pill MST and neurontin. the neurotin seems to work well for about six weeks and then loses it effectivness,i then switch to morphine MST this always works but you cannot take it long term six weeks on the MST and then back to the neurontin. the changes are always just aswitch over. i take up to 30mgs of MST and up to600mgs of the neurotin.i do not advocate this regeme for everyone but at the moment it works for me. my tn came on suddenly 10 years ago one moment i was perfectly healthy the next i was on the floor wondering what had hit me.the pain was immense i thought i was having a stroke i could not believe that such a pain was in existence.i was lucky my doctor could see the pain i was in and injected morphine when it took effect i could tell him what had happened.the next day tn was diagnosed and so began the long haul trying to get something done.the National hospital ,queens square london is perhaps the best place in england and the most switched on doctor is a Mr Brookes. if you are diagnosed with tn get to the national as quickly as you can go private if you have to. never give in to the thing in your face i know its hard one day someone will decide to make us worth more research yours ROD
ROD BRAMMER <shalden@bt internet.com>
bampton,devon, england - Monday, January 01, 2001 at 09:40:48 (PST)

Whatever happened to the guest with TM who wrote about the book THE NEURAL BLOCADE TEXTBOOK IN CLINICAL ANESTHESIA AND MANAGEMENT OF PAIN by J>P Lippincott second edition. They had submitted it to their doctor who was able to perform blocks to relieve the person's pain.
Bernice
NY USA - Monday, January 01, 2001 at 07:23:04 (PST)

62

GAMMA KNIFE SURGERY

This video is courtesy of The Center for Image-Guided Neurosurgery, University of Pittsburgh Medical Center, Presbyterian Hospital. Web: www.neurosurgery.pitt.edu. Click on "Centers of Excellence" for phone and email contact information.

64Home| About TN | Resources Fran's Experience The Beginning In the spring of 1993, Fran, a sixty-year old woman, awoke just before dawn to the most excruciating pain she had ever felt. The pain initially generated from the top of her head and could be described as a frying sensation. Within a few hours, it had moved to the area around her right eye. She contacted her family physician and upon examination, he told her he thought she had trigeminal neuralgia, a disorder of the fifth cranial nerve. Fran's attacks involved the upper branch of the trigeminal nerve, the ophthalmic branch. Fran was given a prescription for carbamazepine (Tegretol), an anti-convulsant that slows the function of the nerve. She was referred to a neurosurgeon. The neurosurgeon told Fran that one possible solution was to have a nerve clipped at the base of the brain stem. An alternative would be to continue on the Tegretol. Since the Tegretol had been providing some relief, Fran chose this option and the neurosurgeon referred her back to her family physician to continue treatment on medication. Fran's family physician was interested in determining the cause of her trigeminal neuralgia. She had recently had extensive dental work and he felt that might have been involved. Fran went to her dentist who determined that her teeth were fine and there were no complications from her dental work. Over the course of a year, she also visited an endodontist, had x-rays checked by an oral surgeon, and was examined by a facial dentist. All agreed that her teeth were not the cause of her pain. Fran's attacks, which felt like a lightning flash in her right temple, eye, and forehead, were increasing in frequency and intensity. If she touched the right side of her face or head, it could trigger an attack. She wanted to explore all her treatment options, so her family physician referred her to another neurosurgeon at a local university medical center. This neurosurgeon doubled Fran's dosage of Tegritol, but told her that this would be the maximum dosage she could take. This doctor also offered her the option of having the nerve clipped, but warned her that the procedure may not successfully alleviate the pain. In addition, there was the possibility that her eye could become numb, leading to possible scratching of the cornea if she were to get something in her eye. Although eager to end the pain, she was hesitant to commit to any type of surgery that might leave her with other problems. Fran reluctantly decided to stay on medication. Her family physician added a prescription for Clonazepam to be used in conjunction with the Tegretol. On the Track of a Solution Fran felt that her situation was hopeless. Within six months of her visit to the second neurosurgeon, Fran's attacks had progressed to the point where she was limiting her diet to liquids, was unable to drive, and rarely left her house. Sunlight, wind, brushing her teeth, or chewing could trigger attacks. Even though she had been assured that her condition was not life threatening, the attacks were becoming so severe she wondered how she could continue to survive them. A visit to the hospital for an unrelated illness proved to be Fran's lucky day. Fran encountered another patient who inquired about the severe head pain she was obviously experiencing. Fran explained her symptoms, expecting the woman to be sympathetic to her "migraine" headaches. To Fran's surprise, the woman understood about trigeminal neuralgia. This woman knew a man who had suffered from trigeminal neuralgia and was now free from pain. She gave Fran the man's phone number and for the first time since that morning in 1993, Fran felt that her situation might have a positive solution. Fran contacted this man, who lived in Virginia, and found out that he had visited a neurosurgeon in Richmond. This neurosurgeon, Dr. Singh Sanhi, had given him an injection of glycerol which had proven successful. This man gave Fran the name of two other people who had trigeminal neuralgia and had sought treatment from Dr. Sanhi. Both had had a procedure called microvascular decompression that had proven successful for them. Fran felt encouraged, but wondered if it was practical to obtain treatment out-of-state. If she needed emergency treatment with this condition, help would be hours away. As Fran debated what to do, her condition continued to deteriorate. During a two-week period, her pain had become so severe she stopped eating, could not touch her face, or brush her teeth. She rarely got out of bed. Fran's husband felt that something had to be done immediately and called to make an appointment for her to visit Dr. Sahni. He explained her condition and was given an appointment for the next day. Fran's Treatment Fran remembers very little about her first visit to this doctor. Since she was from out-of-state, Fran was admitted to the hospital upon leaving his office and was scheduled to receive a glycerol injection the next day. Dr. Sanhi explained to Fran's family that this procedure might end her pain. If not, it would possibly alleviate it enough to allow her to regain her strength for a more invasive procedure - microvascular decompression. He said that depending on the cause of the trigeminal neuralgia and the type of treatment previously received, microvascular decompression might not be an option for everyone. His recommendation for Fran was that if the glycerol injection did not work, she was a good candidate for microvascular decompression. For two weeks after receiving the injection, Fran was free from the horrible pain that had ruled her life for the last four years and she was elated. Her joy was to be short-lived however. The attacks began again--quick and far apart at first; then becoming more intense. Fran decided to have the microvascular decompression surgery. In Fran's case, two blood vessels were wrapped around the nerve. Blood would pulsate through the blood vessels causing them to bump against the nerve. Eventually, where the pulsating blood vessels made contact with the nerve, the insulation around the nerve wore away. With microvascular decompression, the neurosurgeon removed the blood vessels from the nerve and used a teflon pad to protect the nerve from the blood vessels. Fran awoke the morning after the surgery free of pain. Her family was pleasantly surprised to find her sitting up in her hospital bed eating bacon and eggs for breakfast. In three days, she was on her way home. Fran has been pain free from trigeminal neuralgia since April 1997. She also has not experienced any complications from the surgery. Although she felt like she lost several years out of her life and knows the pain could return, she is grateful that she has been able to resume the life she enjoyed prior to the trigeminal neuralgia. Disclaimer - The author is not a medical professional and the information in this presentation is not intended to substitute for, or suggest appropriate medical treatment. © 1998-2002 - Bailey Web Designs. All rights reserved.

65 From: http://curezone.com/dental/root_canal.asp   added 10-05-04  Root Canal Report of Caution. I am not sure if the detailed info below is fact or fiction.   Send me an email Effective Non-Drug Non-Surgical Solutions for Chronic Illnesses Dr. Joseph Mercola 1443 W. Schaumburg Rd. Schaumburg, IL 60194-4065 'phone 847-985-1777 ROOT CANALS POSE HEALTH THREAT AN INTERVIEW WITH GEORGE MEINIG, D.D.S.   HOME - Dr. Meinig brings a most curious perspective to an expose of latent dangers of root canal therapy - fifty years ago he was one of the founders of the American Association of Endodontists (root canal specialists)! So he's filled his share of root canals. And when he wasn't filling canals himself, he was teaching the technique to dentists across the country at weekend seminars and clinics. About two years ago, having recently retired, he decided to read all 1174 pages of the detailed research of Dr. Weston Price, (D.D.S). Dr. Meinig was startled and shocked. Here was valid documentation of systemic illnesses resulting from latent infections lingering in filled roots. He has since written a book, "Root Canal Cover-Up EXPOSED - Many Illnesses Result", and is devoting himself to radio, TV, and personal appearances before groups in an attempt to blow the whistle and alert the public. MJ Please explain what the problem is with root canal therapy. GM First, let me note that my book is based on Dr. Weston Price's twenty-five years of careful, impeccable research. He led a 60-man team of researchers whose findings - suppressed until now rank right up there with the greatest medical discoveries of all time. This is not the usual medical story of a prolonged search for the difficult-to-find causative agent of some devastating disease. Rather, it's the story of how a "cast of millions" (of bacteria) become entrenched inside the structure of teeth and end up causing the largest number of diseases ever traced to a single source. MJ What diseases? Can you give us some examples? GM Yes, a high percentage of chronic degenerative diseases can originate from root filled teeth. The most frequent were heart and circulatory diseases and he found 16 different causative agents for these. The next most common diseases were those of the joints, arthritis and rheumatism. In third place - but almost tied for second - were diseases of the brain and nervous system. After that, any disease you can name might (and in some cases has) come from root filled teeth. Let me tell you about the research itself. Dr. Price undertook his investigations in 1900. He continued until 1925, and published his work in two volumes in 1923. In 1915 the National Dental Association (which changed its name a few years later to The American Dental Association) was so impressed with his work that they appointed Dr. Price their first Research Director. His Advisory Board read like a Who's Who in medicine and dentistry for that era. They represented the fields of bacteriology, pathology, rheumatology, surgery, chemistry, and cardiology. At one point in his writings Dr. Price made this observation: "Dr. Frank Billings (M.D.), probably more than any other American internist, is due credit for the early recognition of the importance of streptococcal focal infections in systemic involvements." What's really unfortunate here is that very valuable information was covered up and totally buried some 70 years ago by a minority group of autocratic doctors who just didn't believe or couldn't grasp - the focal infection theory. MJ What is the "focal infection" theory? GM This states that germs from a central focal infection - such as teeth, teeth roots, inflamed gum tissues, or maybe tonsils - metastasize to hearts, eyes, lungs, kidneys, or other organs, glands and tissues, establishing new areas of the same infection. Hardly theory any more, this has been proven and demonstrated many times over. It's 100% accepted today. But it was revolutionary thinking during World War I days, and the early 1920's! Today, both patients and physicians have been "brain washed" to think that infections are less serious because we now have antibiotics. Well, yes and no. In the case of root-filled teeth, the no longer-living tooth lacks a blood supply to its interior. So circulating antibiotics don't faze the bacteria living there because they can't get at them. MJ You're assuming that ALL root-filled teeth harbor bacteria and/or other infective agents? GM Yes. No matter what material or technique is used - and this is just as true today - the root filling shrinks minutely, perhaps microscopically. Further and this is key - the bulk of solid appearing teeth, called the dentin, actually consists of miles of tiny tubules. Microscopic organisms lurking in the maze of tubules simply migrate into the interior of the tooth and set up housekeeping. A filled root seems to be a favorite spot to start a new colony. One of the things that makes this difficult to understand is that large, relatively harmless bacteria common to the mouth, change and adapt to new conditions. They shrink in size to fit the cramped quarters and even learn how to exist (and thrive!) on very little food. Those that need oxygen mutate and become able to get along without it. In the process of adaptation these formerly friendly "normal" organisms become pathogenic (capable of producing disease) and more virulent (stronger) and they produce much more potent toxins. Today's bacteriologists are confirming the discoveries of the Price team of bacteriologists. Both isolated in root canals the same strains of streptococcus, staphylococcus and spirochetes. MJ Is everyone who has ever had a root canal filled made ill by it? GM No. We believe now that every root canal filling does leak and bacteria do invade the structure. But the variable factor is the strength of the person's immune system. Some healthy people are able to control the germs that escape from their teeth into other areas of the body. We think this happens because their immune system lymphocytes (white blood cells) and other disease fighters aren't constantly compromised by other ailments. In other words, they are able to prevent those new colonies from taking hold in other tissues throughout the body. But over time, most people with root filled teeth do seem to develop some kinds of systemic symptoms they didn't have before. MJ It's really difficult to grasp that bacteria are imbedded deep in the structure of seemingly-hard, solid looking teeth. GM I know. Physicians and dentists have that same problem, too. You really have to visualize the tooth structure - all of those microscopic tubules running through the dentin. In a healthy tooth, those tubules transport a fluid that carries nourishment to the inside. For perspective, if the tubules of a front single-root tooth, were stretched out on the ground they'd stretch for three miles! A root filled tooth no longer has any fluid circulating through it, but the maze of tubules remains. The anaerobic bacteria that live there seem remarkably safe from antibiotics. The bacteria can migrate out into surrounding tissue where they can "hitch hike" to other locations in the body via the bloodstream. The new location can be any organ or gland or tissue, and the new colony will be the next focus of infection in a body plagued by recurrent or chronic infections. All of the "building up" done to try to enhance the patient's ability to fight infections - to strengthen their immune system - is only a holding action. Many patients won't be well until the source of infection - the root canal tooth - is removed. MJ I don't doubt what you're saying, but can you tell us more about how Dr. Price could be sure that arthritis or other systemic conditions and illnesses really originated in the teeth - or in a single tooth? GM Yes. Many investigations start with the researcher just being curious about something - and then being scientifically careful enough to discover an answer, and then prove it's so, many times over. Dr. Price's first case is very well documented. He removed an infected tooth from a woman who suffered from severe arthritis. As soon as he finished with the patient, he implanted the tooth beneath the skin of a healthy rabbit. Within 48 hours the rabbit was crippled with arthritis! Further, once the tooth was removed the patient's arthritis improved dramatically. This clearly suggested that the presence of the infected tooth was a causative agent for both that patient's and the rabbit's - arthritis. [Editor's Note - Here's the story of that first patient from Dr. Meinig's book: "(Dr. Price) had a sense that, even when (root canal therapy) appeared successful, teeth containing root fillings remained infected. That thought kept prying on his mind, haunting him each time a patient consulted him for relief from some severe debilitating disease for which the medical profession could find no answer. Then one day while treating a woman who had been confined to a wheelchair for six years from severe arthritis, he recalled how bacterial cultures were taken from patients who were ill and then inoculated into animals in an effort to reproduce the disease and test the effectiveness of drugs on the disease. With this thought in mind, although her (root filled) tooth looked fine, he advised this arthritic patient, to have it extracted. He told her he was going to find out what it was about this root filled tooth that was responsible for her suffering. "All dentists know that sometimes arthritis and other illnesses clear up if bad teeth are extracted. However, in this case, all of her teeth appeared in satisfactory condition and the one containing this rootcanal filling showed no evidence or symptoms of infection. Besides, it looked normal on x-ray pictures. "Immediately after Dr. Price extracted the tooth he dismissed the patient and embedded her tooth under the skin of a rabbit. In two days the rabbit developed the same kind of crippling arthritis as the patient - and in ten days it died. "..The patient made a successful recovery after the tooth's removal! She could then walk without a cane and could even do fine needlework again. That success led Dr. Price to advise other patients, afflicted with a wide variety of treatment defying illnesses, to have any root filled teeth out."] In the years that followed, he repeated this procedure many hundreds of times. He later implanted only a portion of the tooth to see if that produced the same results. It did. He then dried the tooth, ground it into powder and injected a tiny bit into several rabbits. Same results, this time producing the same symptoms in multiple animals. Dr. Price eventually grew cultures of the bacteria and injected them into the animals. Then he went a step further. He put the solution containing the bacteria through a filter small enough to catch the bacteria. So when he injected the resulting liquid it was free of any infecting bacteria. Did the test animals develop the illness? Yes. The only explanation was that the liquid had to contain toxins from the bacteria, and the toxins were also capable of causing disease. Dr. Price became curious about which was the more potent infective agent, the bacteria or the toxin. He repeated that last experiment, injecting half the animals with the toxin-containing liquid and half of them with the bacteria from the filter. Both groups became ill, but the group injected with the toxins got sicker and died sooner than the bacteria injected animals. MJ That's amazing. Did the rabbits always develop the same disease the patient had? GM Mostly, yes. If the patient had heart disease the rabbit got heart disease. If the patient had kidney disease the rabbit got kidney disease, and so on. Only occasionally did a rabbit develop a different disease - and then the pathology would be quite similar, in a different location. MJ If extraction proves necessary for anyone reading this, do you want to summarize what's special about the extraction technique? GM Just pulling the tooth is not enough when removal proves necessary. Dr. Price found bacteria in the tissues and bone just adjacent to the tooth's root. So we now recommend slow-speed drilling with a burr, to remove one millimeter of the entire bony socket. The purpose is to remove the periodontal ligament (which is always infected with toxins produced by streptococcus bacteria living in the dentin tubules) and the first millimeter of bone that lines the socket (which is usually infected). There's a whole protocol involved, including irrigating with sterile saline to assure removal of the contaminated bone chips, and treating the socket to stimulate and encourage infection-free healing. I describe the procedure in detail, step by step, in my book [pages 185 and 186]. MJ Perhaps we should back up and talk about oral health - to PREVENT needing an extraction. Caries or inflamed gums seem much more common than root canals. Do they pose any threat? GM Yes, they absolutely do. But let me point out that we can't talk about oral health apart from total health. The problem is that patients and dentists alike haven't come around to seeing that dental caries reflect systemic - meaning "whole body" - illness. Dentists have learned to restore teeth so expertly that both they and their patients have come to regard tooth decay as a trivial matter. It isn't. Small cavities too often become big cavities. Big cavities too often lead to further destruction and the eventual need for root canal treatment. MJ Then talk to us about prevention. GM The only scientific way to prevent tooth decay is through diet and nutrition. Dr. Ralph Steinman did some outstanding, landmark research at Loma Linda University. He injected a glucose solution into mice - into their bodies, so the glucose didn't even touch their teeth. Then he observed the teeth for any changes. What he found was truly astonishing. The glucose reversed the normal flow of fluid in the dentin tubules, resulting in all of the test animals developing severe tooth decay! Dr. Steinman demonstrated dramatically what I said a minute ago: Dental caries reflect systemic illness. Let's take a closer look to see how this might happen. Once a tooth gets infected and the cavity gets into the nerve and blood vessels, bacteria find their way into those tiny tubules of the dentin. Then no matter what we do by way of treatment, we're never going to completely eradicate the bacteria hiding in the miles of tubules. In time the bacteria can migrate through lateral canals into the surrounding bony socket that supports the tooth. Now the host not only has a cavity in a tooth, plus an underlying infection of supporting tissue to deal with, but the bacteria also exude potent systemic toxins. These toxins circulate throughout the body triggering activity by the immune system - and probably causing the host to feel less well. This host response can vary from just dragging around and feeling less energetic, to overt illness - of almost any kind. Certainly, such a person will be more vulnerable to whatever "bugs" are going around, because his/her body is already under constant challenge and the immune system continues to be "turned on" by either the infective agent or its toxins - or both. MJ What a fascinating concept. Can you tell us more about the protective nutrition you mentioned? GM Yes. Dr. Price traveled all over the world doing his research on primitive peoples who still lived in their native ways. He found fourteen cultural pockets scattered all over the globe where the natives had no access to "civilization" - and ate no refined foods. Dr. Price studied their diets carefully. He found they varied greatly, but the one thing they had in common was that they ate whole, unrefined foods. With absolutely no access to tooth brushes, floss, fluoridated water or tooth paste, the primitive peoples studied were almost 100% free of tooth decay. Further - and not unrelated - they were also almost 100% free of all the degenerative diseases we suffer - problems with the heart, lungs, kidneys, liver, joints, skin (allergies), and the whole gamut of illnesses that plague Mankind. No one food proved to be magic as a preventive food. I believe we can thrive best by eating a wide variety of whole foods. MJ Amazing. So by "diet and nutrition" for oral (and total) health you meant eating a pretty basic diet of whole foods? GM Exactly. And no sugar or white flour. These are (and always have been) the first culprits. Tragically, when the primitives were introduced to sugar and white flour their superior level of health deteriorated rapidly. This has been demonstrated time and again. During the last sixty or more years we have added in increasing amounts, highly refined and fabricated cereals and boxed mixes of all kinds, soft drinks, refined vegetable oils and a whole host of other foodless "foods". It is also during those same years that we as a nation have installed more and more root canal fillings - and degenerative diseases have become rampant. I believe - and Dr. Price certainly proved to my satisfaction - that these simultaneous factors are NOT coincidences. MJ I certainly understand what you are saying. But I'm still a little shocked to talk with a dentist who doesn't stress oral hygiene. GM Well, I'm not against oral hygiene. Of course, hygiene practices are preventive, and help minimize the destructive effect of our "civilized", refined diet. But the real issue is still diet. The natives Dr. Price tracked down and studied weren't free of cavities, inflamed gums, and degenerative diseases because they had better tooth brushes! It's so easy to lose sight of the significance of what Dr. Price discovered. We tend to sweep it under the rug - we'd actually prefer to hear that if we would just brush better, longer, or more often, we too could be free of dental problems. Certainly, part of the purpose of my book is to stimulate dental research into finding a way to sterilize dentin tubules. Only then can dentists really learn to save teeth for a lifetime. But the bottom line remains: A primitive diet of whole unrefined foods is the only thing that has been found to actually prevent both tooth decay and degenerative diseases. To order "Root Canal Cover-Up EXPOSED - Many Illnesses Result", by Dr. Meinig, send your check or money order (U.S. funds) for $19.95 + $2.00 shipping ($2.50 to Canada, $3.00 to other countries), California residents add $1.45 for state sales tax. Send to Bion Publishing, 323 E. Matilija 110-151, Ojai, CA 93023. Effective Non-Drug Non-Surgical Solutions for Chronic Illnesses Dr. Joseph Mercola 1443 W. Schaumburg Rd. Schaumburg, IL 60194-4065 'phone 847-985-1777 ROOT CANALS POSE HEALTH THREAT AN INTERVIEW WITH GEORGE MEINIG, D.D.S

66 Trials and Treatments of Anesthesia Dolorosa  From : http://www.tna-support.org/newlook/tnalert_files/Tnalertarchives/trials.htm   By George Weigel l TNALERTeditor, Winter 1995-1996 The pain may not be as excruciating as trigeminal neuralgia, but anesthesia dolorosa can be just as troubling. Some say this rare after-effect of TN surgery feels like a burning sensation in the face. Others say it's more like a prickling feeling. At the same time, though, the area i dead to the touch -- a kind of incongruous combination of pain and numbness both. "It feels like hundreds of bees are stinging my face and lips on the left side only," says June Tabor, an anesthesia dolorosa sufferer from Bluefield W.V. "My lips feel thick and swollen and they burn constantly." "My left eye feels as though it is surrounded by little firings of pin pricks and the condition is constant," Is how James Leslie of Holmes Beach, Fla. describes his pain. "It's a burning sensation, worst when I'm idle," says Larry Michelotti of Howard Beach, N.Y. For Mary Halldorson of Charlotte N.C., there's a feeling of pressure in her eye to go along with pain, and it seems to get worse when the barometer drops or when there's a significant change m temperature, such as when she's near an air conditioner or standing over a hot stove. And for Anthony Ferraiolo of Yonkers, N.Y., it's a troubling combination of pressure, heaviness and pain. "My head feels like a bowling bowl," he says. Though the descriptions are different, each is anesthesia dolorosa, one of the most dreaded complications of TN surgery. It's dreaded because medicine hasn't yet come up with a really good way to fix it. Unlike TN, there are no two or three drugs widely regarded as effective. Rather, doctors try an array of drugs that cross over a variety of categories, including pain-killers, anticonvulsants, antidepressants, sedatives and narcotics. None, to date, have been found to be particularly effective. On the bright side, anesthesia dolorosa Is a very rare complication, and it's one that Cincinnati neurosurgeon and Trigeminal Neuralgia Association Medical Advisory Board member Dr. John M. Tew Jr. says usually improves with time. According to case studies and TNA members with this condition, its slightly more likely to happen as a result of the radio frequency rhizotomy procedure than other surgeries, but even then the incidence is only 2 percent or less. Glycerol injections and complete or partial cutting of the trigeminal nerve are the second most likely surgeries to lead to anesthesia dolorosa (1 to 2 percent), while it occurs in only 1 in 1,000 cases or fewer with balloon compressions and microvascular decompressions. "Fortunately, this is a very rare complication'', says TNA President Claire Patterson. "Most surgeries are quite successful. But as an association we're trying to bring this problem into the foreground so more efforts can be made toward addressing it Anesthesia dolorosa (sometimes called "analgesia dolorosa") occurs when the trigeminal nerve is damaged in such a way that the sense of touch is diminished or eliminated while a malfunctioning sensation of pain is left intact. That's possible because different nerve fibers perform different functions. Anesthesia dolorosa pain is different from TN pain in that It's usually constant rather than intermittent, and it tends to have a burning or jabbing quality rather than the sharp, electric-like jolts of TN. That's an important trait in telling the difference between true anesthesia dolorosa and a recurrence of T N pain with lingering numbness, says New York neurosurgeon Dr. Ronald Brisman, also a member of TNA's Medical Advisory Board. That distinction affects the course of treatment, he adds. A Classic, First Hand Description Lisa Gregory of Pinellas Park, Fla., provides a classic description of anesthesia dolorosa: "I have a constant burning down my eye and across my cheek to above my teeth. It doesn't no away not like TN. It feels as if I 'Sometimes there's a heaviness or tightness across the same area, like a vice is across my face. At the same time, my face is numb. But I still have the constantly burning face that only I know is killing me." Dr. Ronald Young, a Seattle neurosurgeon and TNA Medical Advisory Board member, says that although there is no single treatment that's 100 percent effective, there are many options -each of which has helped at least some people. Dr. Young, for example, says he has had success using the anticonvulsant drugs carbamazepine (Tegretol) and phenytoin (Dilant~n), the antidepressant drug amitriptyline (Elavil) and occasionally some prescription pain-killers. Dr. Brisman says he also has had success with amitriptyline and with the antidepressant nortriptyline (Pamelor.) Two forms of anesthesia dolorosa Dr. Steven Graff-Radford, director of the Head and Neck Section of Cedars Sinai Medical Center's Pain Center in Los Angeles and also a member of TNA's Medical Advisory Board, says he has found two different forms of anesthesia dolorosa. He tells the difference by a diagnostic use of a thermogram (which measures minute temperature differences in the painful area) and nerve blocks of the sympathetic nervous system. One form responds best to topical applications of the blood-pressure drug clonidine (Catapres) plus repeated nerve blocks, he says. In those cases he also uses a tricyclic antidepressant drug and-or a drug that blocks the brain's uptake of serotonin. His favorite two in those categories are, respectively, nortriptyline and paroxetine (Paxil). If there is a sharp, shooting or electric component to the patient's pain, Dr. Graff-Radford uses some of the same drugs that are effective for TN, such as carbamazepine, phenytoin, baclofen (Lioresal), valproate (Depakote) or the new anticonvulsant gabapentin (Neurontin.) For the other form of anesthesia dolorosa, Dr. Graff-Radford uses the topical anesthetic EMLA (which hospitals often use to numb the skin before inserting an intravenous line) along with the hot-pepper-based, over-the-counter cream Zostrix, typically used for arthritis. Has patients use these five times per day for five days, then three times per day thereafter. 'This should desensitize the region," explains Dr. Graff-Radford, adding that he also typically recommends nortriptyline and paroxetine for these patients as well. Dr. Kim J. Burchiel, an Oregon neurosurgeon and TNA Medical Advisory Board member, says he's had success with the anticonvulsant clonazepam (Klonopin). And he's also helped some patients with intravenous treatments of the anesthetic lidocaine, and most recently with IV treatments of Ketamine, a drug that affects how the brain processes pain signals. Dr. Burchiel says he believes "we will see great progress" in the future in developing tablet forms of such new-generation pain-relieving drugs as Ketamine. "When all else fails," says Dr. Graff-Radford, "I feel that the use of high dose, long-acting narcotics may be of great significance.'' "Psychological treatment may also be very helpful in dealing with anesthesia dolorosa," adds Dr. Young. "It may not reduce the intensity of the pain itself, but it certainly may be very helpful in assisting the patient in coping or dealing with the pain. When drugs fail, Dr. Young says he has done thalamotomies and cingulotomies -- surgeries that selectively damage parts of the brain associated with pain sensation. Another surgery that some surgeons try is the dorsal root entry zone (DREZ), a procedure developed by Dr. Blaine Nashold at Duke University. It also involves selectively damaging a part of the pain-transmission system at the back of the head with a Radiofrequency electrode. Some Leery of DREZ Prospects Dr. Peter Jannetta, chief of neurosurgery at the University of Pittsburgh and chairman of TNA's Medical Adv'sory Board, says the success rate of the DREZ procedure is only about 50-50 at best, and it can produce some troubling side effects of its own, such as numbness or loss of coordination in the arms and hands. "DREZ may be helpful," says Dr. Young "but my own experience has been that the success rate is low and the complication rate is extremely high so I recommend this only as the absolute last-ditch effort." Dr. Brisman concurs. However, a 1994 research paper by Dr. Nashold and three other researchers at Duke reports that a new type of electrode has considerably lowered the limb problems to 33 percent of the cases while achieving pain relief for 70 percent of the 21 patients in the study. When anesthesia dolorosa is the diagnosis, Dr. Young advises against any further TN surgeries designed to damage the trigem~nal nerve Itself, such as Radiotrequency rhizotomies or glycerol injections. "It's very important not to try destroying the trigeminal nerve root any more, he says, 'otherwise the anesthesia dolorosa can be made worse." Among some of the other treatments that anesthesia dolorosa patients have tried with some success include: acupuncture, hypnosis, biofeedback TENS units, ice packs and various sorts of surgical nerve blocks. "Sometimes just talking to others with the same problem may be helpful," adds Patterson. Trigeminal Neuralgia, aka Tic douloreaux  or  TN & Temporomandibular  Joint aka TMJ  Eventually Cancer.This website is about Brian Nelson's fight with a parotid (salivary) gland tumor. It started out with the symptoms of  Trigeminal Neuralgia, aka Tic douloreaux  or  TN & Temporomadibular Joint aka TMJ Click Here to see my other record file at IAmFightingCancer.com  Bookmark this page now!    Scan down to read my very lengthy and detailed web journal. 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7 Trigeminal Neuralgia - Microvascular Decompression Introduction  From http://www.medstudents.com.br/neuroc/neuroc2.htm The pain produced by trigeminal neuralgia ( TN ) is excruciating, perhaps the worst pain know to human beings. Walter Dandy pioneered the  posterior fossa approach for the treatment of TN. In 1934, Dandy (1) outlined his theory of vascular compression as a cause of TN, and pointed  to the main problem with that theory; namely, that vascular contact occasionally occurs without the production of pain and may be absent when  neuralgia is present. Dandy identified the major compressing vessel as the anterior inferior cerebellar artery. Peter Jannetta (2) was the first neurosurgeon to apply the operating microscope to the problem of TN. He observed the almost universal occurrence of vascular channels  compressing the trigeminal nerve in patients with TN and devised a technique for nondestructive microvascular decompression of the nerve. Pathophysiology The pathophysiology mechanisms responsible for the paroxysmal pain of TN remains unknown, despite extensive research directed toward the study of neurophysiology of the trigeminal system. Various researches have implicated central mechanisms in patients with TN; others have argued for a peripheral mechanism. Clinical observations supporting a peripheral mechanism include the occurrence of TN as the manifestation  of a mass lesion ( tumor, dolichoectatic basilar artery, or aneurysm ) compressely the preganglionic trigeminal root in the posterior or middle cranial fossa. Barker II and cols. (3) studied 26 patients, during a period of 20 years, with typical symptoms of TN and with posterior fossa tumors at operation. These tumors included 14 meningiomas, 8 acoustic neurinomas, 2 epidermoide tumors, 1 angiolipoma, and 1 ependymoma. At the operation, the root entry zone of the trigeminal nerve was examined for vascular cross-compression in 21 patients. Vessels compressing the nerve at the root entry zone were observed in all patients examined. Probable this peripheric mechanism is the correct one. Janetta affirms that  TN is a painful condition caused by a abnormality of the root entry zone of the trigeminal nerve, and that the abnormality may be associated with cross-compression by an artery loop that has imposed upon the nerve as a result of vascular elongation secondary to the aging process,  or by a cross-compressing vein, or by both. Jannetta identified the vessels involved in 1.204 consecutive, previously unoperated sides, in patients with typical TN ( Table 01 ) Table 01 : Vessel found to compress the Trigeminal nerve in 1.204 consecutive previously unoperated sides in patients with typical TN (2). _____________________________________________________ Superior cerebellar artery ---------------- 75,5% Anterior inferior cerebellar artery -------- 9,6% Posterior inferior cerebellar artery ------- 0,7% Vertebral artery --------------------------- 1,6% Basilar artery ----------------------------- 0,7% Labyrinthine artery ------------------------ 0,2% Unnamed small artery ----------------------- 15,4% Vein --------------------------------------- 68,2% Vein only ---------------------------------- 12,5% Vein and artery ---------------------------- 55,7% Unnamed small artery or vein only ---------- 18,5% ______________________________________________________ The evidence supporting a central mechanism relates to the provocation of a severe discharge of pain by minimal tactile stimulation, the prolongation of pain spasm after it onset, and the development of a posited refractory period in which local stimuli do not trigger the pain. In this manner the pain is somewhat like a seizure or epileptic event (4). Clinical Presentation Several criteria must be met before arriving at a recommendation of surgery - Microvascular decompression ( MVD ). First and for most is the certainly of diagnosis. Patients uniformly complain of severe, instant-onset, relatively brief ( tics ) , very intense paroxysms of electric shock like lancinating pain confined to the territory of one or more contiguous branches of the trigeminal nerve ( table 02 ). The pain may occur spontaneously but is usually triggered by light, non noxious, tactile stimuli such as moving the face while talking, touching the face, wind on the face, kissing, eating, or brushing the teeth. It’s infrequently nocturnal. Table 02 : Spatial distribution of symptoms in TN, in 1.204 patients operated on by Jannetta.(2) Division involved : First ( V1 ) only ----------------------- 2,8% Second ( V2 ) only ---------------------- 17,7% Third ( V3) only ------------------------ 14,6% V1 + V2 --------------------------------- 17,2% V2 + V3 --------------------------------- 35,4% V1 + V3 --------------------------------- 0 V1 + V2 + V3 ---------------------------- 12,3% Patients with TN frequently have mild sensory loss in the pure distribution of trigeminal nerve. The Trigeminal reflex ( corneal reflex, blink reflex, masseter inhibitory periods, jaw-jerk ) have abnormalities (4).The corneal reflex may be decreased, especially in neuralgia of first division trigeminal nerve, and it may be decreased in only part of the cornea, especially the upper half. These changes revert to normal gradually after MVD of the nerve. TN predominates in middle and old age. The correlation of “ tics “ with arteriosclerosis is clear. This correlates well with the arteriosclerotic tortuous elongation of arteries - loops. The predominance is in women. The reasons for the predominance in women are not clear. It may be explained by the fact that the posterior fossa is smaller in women than in men. It is also possible that the effect of estrogen, which causes elongation of arteries, may be the reason for this increased incidence. This is only conjecture, and better information in needed. Management and Treatment Most patients respond to carbamazepine; so failure to achieve benefit from those medication in adequate doses ( 600 to 800 mg/day in divided doses ) should lead to reassessment of diagnosis. Patients who are candidates for surgery should have an adequate trial of medical therapy. By starting at a low dosage and gradually increasing the medication, most patients can be brought to and adequate therapy. By starting at a low dosage and gradually increasing medication, most patients can be brought too an adequate level. Side effects include sedation, trouble concentration, feeling “ like a zombie “, and hematologic and hepatotoxic effects have also been reported, so patients need to be monitored carefully while on this medication. Nevertheless, it is effective initially in close to 90 percent of patients with TN (5). Fenitoin is the next most effective drug and is appropriate either alone or with carbamazepine in those patients who are not well controlled with carbamazepine . Failure to completely control the pain, so that the patient is pain free and does not live in the fear of recurrence attacks is an indication for MVD. Prior to considering surgery, all patients should have magnetic Resonance Imaging ( MRI ) scan, with close attention being paid to the posterior fossa. This is done to rule out other causes of compression of the trigeminal nerve such as mass lesions, large catatic vessels , or other vascular malformations. The MVD is extraordinarily effective in reliving the pain and has the major advantage of sparing facial sensation and avoid dysesthetic sensation. Operative Technique A number of positions are satisfactory in allowing the surgeon to gain access to the posterior fossa using a high lateral approach. Patients can be operated on in the prone position, lateral decubitus position, and supine position with the head rotated, as well as in the siting position. The latter affords a uniform anatomical orientation that is easily conceptualized by the surgeon. The patient is anesthetized , intubated, and placed in a chosen position with the head fixed in a pin head holder ( Fig. 01 ). Fig. 01 : Retrosigmoid approach. Observe the position and incision ( red line ). Observe the area of craniectomy ( black shading ). The ipsilateral posterior side of the head is shaved on the operation room. An incision 2.5 to 6.0 cm in length is made 2.0 cm posterior to the mastoid process, with about one third of the incision above the nape line. This incision parallels the hairline. Periostal elevators and eletrocoagulators are used to separate the nape muscles, fascia, and pericranium away from the calvaria.   A craniectomy ( usually 2.5 to 3.0 cm in size ) is performed high and laterally in the posterior fossa, exposing in the caudal edge of the lateral sinus and its junction with the sigmoid sinus and extending into the mastoid air cells laterally if necessary. Any open air cells are waxed heavily. An incision is made in the dura mater under the lateral sinus and extends caudally. The superolateral dura flap is incised to the lateral sinus, and the dura is sutured to the galea to tent the lateral sinus up and away. During the dura mater dislocation and opening is necessary to make valsava maneuver to avoid air embolism (Fig.02 ). Fig. 02 : Craniectomy and dural opening that parallels the transverse and sigmoid sinuses. Opened mastoid cells are immediately covered over with wax ( green ) The operating binocular microscope is introduced. The superior petrosal vein is identified and coagulated. Afterwards it’s divided. So the retractor is placed over the ala of the cerebellum, with usually covers the trigeminal nerve superolaterally at the pons. The arachnoid is opened anteromedial to the vein, exposing the trigeminal nerve. After sharp and blunt dissection of the arachnoid from the trigeminal nerve is possible of identifying the vessel related to the root entry zone ( Fig. 03 ). The vessel loop are gently teased out from between the trigeminal nerve and the pons into a horizontal position. The vessel loop may be quite adherent to the nerve or may be easily separated from it. Fig. 03 : Retrosigmoid approach to the area of the trigeminal nerve in vascular compression syndrome. Observe the relations between the trigeminal nerve, brain stem and local vessels. (1) Cerebellum ; (2) superior cerebellar artery; (3) trigeminal nerve; (4) petrosal vein; (5) abducens nerve; (6) anterior inferior cerebellar artery; (7) labyrinthine artery; (8) facial nerve; (9) statoacustic nerve; and, (10) cerebellar flocculus. An implant made of one or multiple pieces of Teflon felt have been shredded and rolled to appropriate size and configuration is put into position. Placement is made while the vessel is held in its new position away from the nerve. The implant is placed between the vessel and the nerve. The valsalva maneuver is performed several times under the control of the anesthetist to determine whether the relationship are stable and ensure hemostasis. The retractor is removed, and the dura is closed. A Methylmethacrylate cranioplasty can be performed . The incision is closed in layers, and a small dry dressing is applied. The operative complications include operative death, brain stem infarct, cerebellar hematoma, cerebellar edema, hydrocephalus, facial paresis, hearing loss, extra-ocular muscle palsies, cerebrospinal fluid leak, pseudomeningocele, bacterial meningitis, severe postoperative headache. Conclusion Peter and Thomas (6) confirm that vascular compression of the fifth cranial nerve is an anatomical abnormality specific to TN. The MVD of the trigeminal nerve has a high rate of satisfaction between the patients who underwent this treatment in relation to symptom relief (7). In patients who reoccurrence occur a subsequent MVD seems to have good long-term results. However, because of the incidence of the significantly high incidence of complications, the indication for subsequent operation should be restricted to younger patients to avoid destructive procedures. In general, glycerol rhizolisis or radiofrequency may be the treatment of choice after failed MVD (8). References ( 1 ) Dandy WE: “ Concerning the cause of Trigeminal Neuralgia “ . Am J Surg 24: 447- 455, 1934. ( 2 ) P. J. Jannetta. “ Microvascular Decompression of The Trigeminal Nerve for Tic Douloreux “, in Youmans - Neurological Surgery. Saunders Company, Fourth edition, 1996, volume 5, pages 3404 - 15. ( 3 ) Barker II, Fred G. and et al. “ Long-term Outcome after Operation for Trigeminal Neuralgia in Patients with Posterior Fossa Tumors “. J. Neurosurg, vol. 84, pages 818-25, may, 1996. ( 4 ) Cruccu G. et al. “ Idiopathic and Symptomatic Trigeminal Pain ”. J. Neurol Neurosurg Psychiatry, 1990 Dec, 53:12, 1034-42. ( 5 ) Ronald I. Apfelbaum. “ Trigeminal Neuralgia : Vascular Decompression ”, in Carter & Spetzler - Neurovascular Surgery. Mc Graw Hill. International edition, pages 1107-18, 1995. ( 6 ) Peter J. Hamlyn, MB., BS. & Thomas T. King, FRCS. Neurovascular Compression in Trigeminal Neuralgia: a Clinical and Anatomical Study “. J. Neurosurgery, volume 76, pages 948-54,june, 1992. ( 7 ) Akinori Kondo, MD. “ Follow-up Results in Microvascular Decompression in Trigeminal Neuralgia and Hemifacial Spasm “. Neurosurgery, vol. 40; pages 46 - 52 ; january 1997. ( 8 ) Rath, Stefan A., MD. & cols. “ Findings and Long-term Results of Subsequent Operations after failed Microvascular Decompression for Trigeminal Neuralgia “. Neurosurgery, vol. 39; pages 933 - 40; november, 1996.

68 Magnetic Resonance Angiography (MRA) from http://www.hmc.psu.edu/healthinfo/m/mra.htm What is it? Magnetic resonance angiography (MRA) is a painless diagnostic test that uses a specific sequence of radio signals to produce extremely detailed images of blood flow inside the body. It is a type of magnetic resonance imaging (MRI) that looks at the blood vessels and blood flow within the brain and head without injecting any radioactive dyes or inserting a catheter into a blood vessel. Who needs this procedure? MRA is used to detect blood clots and aneurysms in the brain, as well as arterial aneurysm and abnormalities in blood vessels that supply the major organs of the body. It is also used to detect narrowed or blocked carotid arteries, located on either side of the neck, which is a leading cause of stroke. How do I prepare for this procedure? While there are no special preparations for this procedure, there are some cases in which MRA/MRI may not be recommended. You cannot have MRA/MRI if you have any metal in your body, such as metal plates, pins, or fragments, which will attract the magnet. You also cannot have MRA/MRI if you have a pacemaker because the magnetic waves may damage it. The effects of magnetic waves on an unborn child have not been determined. For this reason, you should let your doctor know if you are pregnant before having this procedure. Also tell your doctor know if you have difficulty being in small spaces (claustrophobia). How is this procedure performed? Before the procedure begins, you will be asked to remove any clothes that have any metal fasteners, such as zippers, snaps, or hooks, and put on a gown. You will also need to remove any metal jewelry. During the procedure, you may be monitored for vital signs, such as respiration and heart rate. An MRI machine looks like a large, hollow tube with a padded table sticking out of it. As you lie on the table, it moves slowly into the tube. It is very important that you lie very still during the test or the pictures will be blurry. You may be gently strapped to the table to help you lie still. Right outside of the MRI room is a smaller room with a window in it. The radiologist sits in this room and controls the MRI equipment. A microphone allows the radiologist to talk to you throughout the procedure. During the MRA, the machine directs magnetic and radio waves at the part of your body that is being studied. You cannot feel these waves, but as they pass through your body they create a picture that is seen on a computer monitor. Many pictures are taken, and each one provides a view of a different layer of your body. An MRI machine is noisy. You will be given earphones to wear so you can listen to music during the procedure. If you are claustrophobic, your doctor may give you a mild sedative before the test. Or, you may be able to have an open MRI, which does not require you to be inside a tube. If your doctor determines that you need to be injected with a dye (contrast agent) to provide a better picture, the type of dye used carries a low risk of allergic reaction. However, tell your doctor if you have had any allergic reactions to dyes in the past. In most cases, MRA takes between 30 and 90 minutes. What can I expect after the procedure? MRA has no side effects. Your healthcare provider will notify you when he or she has received the results.

69 Types of FACIAL NEURALGIA Pain Craniofacial Pain Syndrome; Craniofacial Pain Syndromes; Facial Neuralgias; Facial Pain Syndrome; Facial Pain Syndromes; Myofacial Pain Syndrome; Myofacial Pain Syndromes; Neuralgia, Facial; Neuralgia, Sphenopalatine; Neuralgias, Facial; Neuralgias, Sphenopalatine; Pain Syndrome, Craniofacial; Pain Syndrome, Facial; Pain Syndrome, Myofacial; Pain Syndromes, Craniofacial; Pain Syndromes, Facial; Pain Syndromes, Myofacial; Sphenopalatine Neuralgia; Sphenopalatine Neuralgias; Syndrome, Craniofacial Pain; Syndrome, Facial Pain; Syndrome, Myofacial Pain; Syndromes, Craniofacial Pain; Syndromes, Facial Pain; Syndromes, Myofacial Pain

70 http://facial-neuralgia.org     STRIKING BACK! A layman's guide to understanding and treating TN and related conditions by  George Weigel &  Kenneth F. Casey, M.D, This important book, published by the Trigeminal Neuralgia Association, is everything we'd hoped our website could ever be and much more.  With chapters on causes, diagnosis, latest  treatment options along with comparative  statistics on outcomes and  complications of  surgical procedures, recommendations on helping your doctor help you, this is a must read book for anyone with face pain. Read more about it or Order your copy from the Trigeminal Neuralgia Association for $16.95 plus $3.00 shipping.  Important:  Do NOT order this book from Amazon.com. It is available only through second parties with pricing starting at $95! Facial Neuralgia Resources is a patient-to-patient resource for victims of face pain caused by disorders of the  cranial nerves.  These disorders include: Trigeminal Neuralgia Atypical Trigeminal Neuralgia  Atypical Facial Pain Anesthesia Dolorosa Facial Neuralgia Resources is a direct offshoot of Trigeminal Neuralgia Resources established in 1995 by a group of TN patients.  We have expanded our focus to encompass all facial neuralgias as we feel strongly we will find strength in unity.  We believe our many common issues will lead to finding improved care for people with these terrible conditions.

71 Special Note: This site is administered by a group of facial neuralgia  victims working on a volunteer basis. None of us is a medical professional and therefore we cannot always guarantee the quality of the medical information in these pages. We WILL NOT GIVE specific medical advice to anyone. These pages are simply here for you to browse and see what others have done or suggested. Before using or even considering any treatment listed here, we strongly urge you to talk with a qualified medical expert.   Who We Are Facial Neuralgia Resources is physically hosted by the Neurosurgical Service at Massachusetts General Hospital but is not associated with Massachusetts General Hospital or Harvard Medical School. MGH has graciously allowed us the use of their server. We are not associated with the Trigeminal Neuralgia Association but strongly support their goals. The FNR project is a team effort founded by Jakke Mäkelä, a physics graduate student at the University of Helsinki.  The current editorial coordinator is  Leslie Carroll.   Polly Potter, who manages the TN-L mailing list, is a co-editor.  Henriette Duddridge (moderator of TN-L) and Julie Murphy are current members of our team. Our webmaster at the Neurosurgical Service at Massachusetts General Hospital is Chris Owen.  TOGETHER, WE CAN MAKE A DIFFERENCE A great many other people have helped us in various ways. They are listed in the  Acknowledgements.    If you have something to contribute , be it a personal story or research, or if you would like to join our team, write to us.

72 GLOSSOPHARYNGEAL NEURALGIA Conditions: Other Cranial Disorders Disclaimer. Glossopharyngeal Neuralgia is described as a deep stabbing pain in one side of the throat. The pain is near the tonsil area and can extend into the ear. Thomas J. Lovely, M.D. , Peter J. Jannetta, M.D. of the University of Pittsburgh have a brief discussion on their experiences treating this condition at: Glossopharyngeal Neuralgia. Links: Glossopharyngeal Neuralgia - Singapore Journal 1999 Medline on Glossopharyngeal Neuralgia Merk Manual-- glossopharyngeal neuralgia Glossopharyngeal neuralgia, CCND Winnipeg Glossopharyngeal neuralgia University of Pittsburgh Glossopharyngeal Neuralgia , B.Todd Troost The following article goes into greater detail although it does not discuss microvascular decompression surgery as a possible treatment.. The following article is excerpted from:   THE MANAGEMENT OF PAIN, VOL 1, Second Edition, 1990, Lea & Febiger, Philadelphia] CRANIAL NEURALGIAS John D. Loeser This article is posted here in compliance with the FAIR USE DOCTRINE and is for educational purposes only, not for commercial use. "Glossopharyngeal neuralgia is characterized by shock like pains in the territory of the glossopharyngeal nerve. It is in every way similar to tic douloureux except for the distribution of the pain and the customary site of the triggering stimulus. Etiology "The vast majority of patients with glossopharyngeal neuralgia are thought to have an artery compressing the nerve as it exits from the medulla and travels through the subarachnoid space to the jugular foramen. This syndrome can be seen in patients with multiple sclerosis, but it is rare. Symptoms and Signs "Glossopharyngeal neuralgia is characterized by excruciating shock-like-pain in the region of the tonsilar fossa, pharynx, or base of the tongue. It can radiate to the ear or the angle of the jaw or into the upper lateral neck. The trigger zone is often in the same area, and patients frequently report that swallowing, yawning, clearing the throat, or talking is the precipitating stimulus. The pain often appears to be spontaneous. Chewing or touching the face does not precipitate an attack. Glossopharyngeal neuralgia is much less common than tic douloureux---the incidence ratio is about 1:100. Diagnosis "The nature of the pain, its description by the patient, and the chronology of the attacks are identical to those of tic douloureux of the trigeminal nerve. Indeed, glossopharyngeal tic is sometimes mistaken for mandibular division trigeminal tic douloureux. Involvement of the glossopharyngeal nerve can be demonstrated by localizing the triggering stimulus to the pharyngeal structures that it innervates. Blocking the trigger area with local anesthetic can confirm the site of the trigger and nerve involvement. This is unsuccessful in some patients because the vagus nerve can contain the involved sensory fibers. The role of the glossopharyngeal nerve in the regulation of heart rate and blood pressure is thought to be why some patients with glossopharyngeal neuralgia have profound cardiac arrhythmia's and even asystole with the attack of pain. The presence of such phenomena guarantees that the pain syndrome involves this nerve. The diagnosis can be confirmed by the cessation of pain when this nerve is blocked at the jugular foramen or when topical anesthesia of the pharynx stops the pain. Treatment "The pharmacologic management is the same as that for tic douloureux of the trigeminal nerve. When medical management fails, suboccipital craniectomy with exploration of the glossopharyngeal nerve is indicated. If a compressing blood vessel is found it can be mobilized, and the pain usually stops without any loss of nerve function. When no structural pathology can be identified, the glossopharyngeal nerve should be Sectioned. In such a case it is wise to Section the upper fibers of the vagus nerve as well, because they can also be involved in the pain syndrome. When rhizotomy is unsuccessful, which happens rarely, the medial aspect of the descending tract of the trigeminal nerve can be Sectioned to produce loss of pain and temperature sensation in the pharynx. "A percutaneous technique of glossopharyngeal neurolysis has been described, but it has not been widely used because of cardiovascular and laryngeal complications. " From:  http://facial-neuralgia.org/conditions/tn-gn.html

74  from: http://www.merck.com/mmhe/sec06/ch096/ch096g.html Glossopharyngeal Neuralgia Glossopharyngeal neuralgia consists of recurring attacks of severe pain in the back of the throat near the tonsils and back of the tongue due to malfunction of cranial nerve IX (glossopharyngeal nerve), which supplies the throat, tonsils, and tongue. Glossopharyngeal neuralgia, a rare disorder, usually begins after age 40 and occurs more often in men. Its cause is unknown. Symptoms As in trigeminal neuralgia, attacks are brief, occur intermittently, but cause excruciating pain. Attacks may be triggered by a particular action, such as chewing, swallowing, coughing, or sneezing. The pain usually begins at the back of the tongue or back of the throat; sometimes pain spreads to the ear. The pain may last several seconds to a few minutes and usually affects only one side of the throat and tongue. The pain may radiate to the ear. In 1 to 2% of people, the heartbeat is affected: It slows so much that it stops temporarily, causing fainting. Diagnosis and Treatment Glossopharyngeal neuralgia is distinguished from trigeminal neuralgia based on the pain's location or results of a specific test. For the test, a doctor touches the back of the throat with a cotton-tipped applicator. If an attack results, the doctor applies a local anesthetic to the back of the throat and repeats the test. If the anesthetic prevents an attack, the diagnosis is glossopharyngeal neuralgia. Taking the Pressure Off a Nerve When pain results from an abnormally positioned artery pressing on a cranial nerve, the pain can be relieved by a surgical procedure called vascular decompression. This procedure may be performed to treat trigeminal neuralgia, hemifacial spasms, or glossopharyngeal neuralgia. If the trigeminal nerve is compressed, an area on the back of the head is shaved, and an incision is made. The surgeon cuts a small hole in the skull and lifts the edge of the brain to expose the nerve. Then the surgeon separates the artery from the nerve and places a small sponge between them. A general anesthetic is required, but the risk of side effects from the procedure is small. Side effects include facial numbness, facial weakness, double vision, infection, bleeding, alterations in hearing and balance, and paralysis. Usually, this procedure relieves the pain, but in about 15% of people, pain recurs. The same drugs used to treat trigeminal neuralgia—carbamazepineSome Trade Names TEGRETOL , phenytoinSome Trade Names DILANTIN , baclofenSome Trade Names LIORESAL , and tricyclic antidepressants (see Cranial Nerve Disorders: Diagnosis and Treatment)—may be helpful. If these drugs are ineffective, applying a local anesthetic to the back of the throat may provide temporary relief. However, for permanent relief, surgery may be needed: The glossopharyngeal nerve is separated from the artery that is compressing it by placing a small sponge between them.

75 from: http://www.nlm.nih.gov/medlineplus/ency/article/001636.htm Glossopharyngeal neuralgia Illustrations Glossopharyngeal neuralgia Definition    Return to top Glossopharyngeal neuralgia is a condition marked by repeated episodes of severe pain in the tongue, throat, ear, and tonsils, which can last from a few seconds to a few minutes. Causes, incidence, and risk factors    Return to top Glossopharyngeal neuralgia is believed to be caused by irritation of the ninth cranial nerve. Symptoms usually begin in people over 40 years of age. In most cases, the source of irritation is never discovered. Nevertheless, tumors or infections of the throat and mouth, compression of the glossopharyngeal nerve by neighboring blood vessels, and other lesions at the base of the skull can sometimes cause this type of neuralgia (nerve pain). Symptoms    Return to top Symptoms include severe pain in the areas connected to the ninth cranial nerves. This includes the throat, tonsillar region, posterior third of the tongue, nasopharynx (back of nose and throat), larynx, and ear. The pain is episodic and may be severe. It can sometimes be triggered by swallowing, chewing, speaking, laughing, or coughing. Signs and tests    Return to top Tests should be done to identify an abnormality at the base of the skull, particularly tumors. These may include X-rays, CAT scan of the head, and head MRI. Sometimes the MRI may show evidence of inflammation of the glossopharyngeal nerve. To determine whether a blood vessel is compressing the nerve, some pictures of the brain arteries can be obtained using techniques, such as magnetic resonance angiography (MRA) or conventional angiography (X-rays of the arteries with a dye). Occasionally, certain blood tests may be needed when the diagnosis is not clear, to rule out other causes of peripheral nerve problems (neuropathy), such as high blood sugar. Treatment    Return to top Treatment is aimed at controlling pain. Unfortunately, over-the-counter pain killers (such as aspirin or acetaminophen) are not very effective for the relief of neuralgia. The most effective drugs are actually anti-seizure medications, like carbamazepine, gabapentin, and phenytoin. Some anti-depressants like amitriptyline are sometimes tried with variable degrees of success. In severe cases, when pain is difficult to treat, surgery aiming at decompressing the glossopharyngeal nerve may be required, which is generally considered effective. If a cause of the neuralgia is identified, the treatment of choice is the control of the underlying problem. Expectations (prognosis)    Return to top Prognosis depends on the underlying cause and the effectiveness of initial treatment. Surgery is considered effective for cases that do not benefit from medications. Complications    Return to top Decreased pulse and fainting may occur when pain is severe. Side-effects of medications may complicate treatment. Calling your health care provider    Return to top Call your health care provider if you have symptoms suggestive of glossopharyngeal neuralgia. See a pain specialist if pain is severe to be sure that all options for controlling pain are available to you. Update Date: 8/1/2002 Updated by: Lucas Restrepo, M.D., Clinical Instructor, Department of Neurology, Johns Hopkins Hospital, Baltimore, MD, Review provided by VeriMed Healthcare Network.

76 From: http://facial-neuralgia.org/conditions/tn-gn.html GLOSSOPHARYNGEAL NEURALGIA Conditions: Other Cranial Disorders Disclaimer. Glossopharyngeal Neuralgia is described as a deep stabbing pain in one side of the throat. The pain is near the tonsil area and can extend into the ear. Thomas J. Lovely, M.D. , Peter J. Jannetta, M.D. of the University of Pittsburgh have a brief discussion on their experiences treating this condition at: Glossopharyngeal Neuralgia. Links: Glossopharyngeal Neuralgia - Singapore Journal 1999 Medline on Glossopharyngeal Neuralgia Merk Manual-- glossopharyngeal neuralgia Glossopharyngeal neuralgia, CCND Winnipeg Glossopharyngeal neuralgia University of Pittsburgh Glossopharyngeal Neuralgia , B.Todd Troost The following article goes into greater detail although it does not discuss microvascular decompression surgery as a possible treatment.. The following article is excerpted from:   THE MANAGEMENT OF PAIN, VOL 1, Second Edition, 1990, Lea & Febiger, Philadelphia] CRANIAL NEURALGIAS John D. Loeser This article is posted here in compliance with the FAIR USE DOCTRINE and is for educational purposes only, not for commercial use. "Glossopharyngeal neuralgia is characterized by shock like pains in the territory of the glossopharyngeal nerve. It is in every way similar to tic douloureux except for the distribution of the pain and the customary site of the triggering stimulus. Etiology "The vast majority of patients with glossopharyngeal neuralgia are thought to have an artery compressing the nerve as it exits from the medulla and travels through the subarachnoid space to the jugular foramen. This syndrome can be seen in patients with multiple sclerosis, but it is rare. Symptoms and Signs "Glossopharyngeal neuralgia is characterized by excruciating shock-like-pain in the region of the tonsilar fossa, pharynx, or base of the tongue. It can radiate to the ear or the angle of the jaw or into the upper lateral neck. The trigger zone is often in the same area, and patients frequently report that swallowing, yawning, clearing the throat, or talking is the precipitating stimulus. The pain often appears to be spontaneous. Chewing or touching the face does not precipitate an attack. Glossopharyngeal neuralgia is much less common than tic douloureux---the incidence ratio is about 1:100. Diagnosis "The nature of the pain, its description by the patient, and the chronology of the attacks are identical to those of tic douloureux of the trigeminal nerve. Indeed, glossopharyngeal tic is sometimes mistaken for mandibular division trigeminal tic douloureux. Involvement of the glossopharyngeal nerve can be demonstrated by localizing the triggering stimulus to the pharyngeal structures that it innervates. Blocking the trigger area with local anesthetic can confirm the site of the trigger and nerve involvement. This is unsuccessful in some patients because the vagus nerve can contain the involved sensory fibers. The role of the glossopharyngeal nerve in the regulation of heart rate and blood pressure is thought to be why some patients with glossopharyngeal neuralgia have profound cardiac arrhythmia's and even asystole with the attack of pain. The presence of such phenomena guarantees that the pain syndrome involves this nerve. The diagnosis can be confirmed by the cessation of pain when this nerve is blocked at the jugular foramen or when topical anesthesia of the pharynx stops the pain. Treatment "The pharmacologic management is the same as that for tic douloureux of the trigeminal nerve. When medical management fails, suboccipital craniectomy with exploration of the glossopharyngeal nerve is indicated. If a compressing blood vessel is found it can be mobilized, and the pain usually stops without any loss of nerve function. When no structural pathology can be identified, the glossopharyngeal nerve should be Sectioned. In such a case it is wise to Section the upper fibers of the vagus nerve as well, because they can also be involved in the pain syndrome. When rhizotomy is unsuccessful, which happens rarely, the medial aspect of the descending tract of the trigeminal nerve can be Sectioned to produce loss of pain and temperature sensation in the pharynx. "A percutaneous technique of glossopharyngeal neurolysis has been described, but it has not been widely used because of cardiovascular and laryngeal complications. "

77 From: http://www.gwc.maricopa.edu/class/bio201/cn/cranial.htm Go to this site to click on 12 cranial nerves which light up when you put your cursor over it. Cranial Nerves: Review Info           There are 12 pairs of cranial nerves.   Olfactory I   Optic II   Oculomotor III   Trochlear IV   Trigeminal V   Abducens VI   Facial VII   Auditory (vestibulocochlear) VIII   Glossopharyngeal IX   Vagus X   Spinal Accessory XI   Hypoglossal XII   To help memorize each, a mnemonic is often used by students such as . . . "On Old Olympic Towering Tops A Finn And German Viewed Some Hops" Cranial Nerve: <