Trigeminal Neuralgia 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. Treatment is by medication, radiosurgery, craniofacial surgery or neurosurgery or Microvascular Decompression (MVD) for nerve pain relief. Trigeminal Neuralgia typically is near the nose lips, eyes, or ears.

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

52 Trigeminal Neuralgia (TN) or tic douloureux is an acute painful disorder of the fifth cranial (trigeminal) nerve and is referred to by many as the “suicide disease”. TN produces excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears. Something as simple and routine as brushing the teeth, putting on makeup, or even a slight breeze can trigger an attack, resulting in acute pain. TN is not a fatal disease, but it is universally considered to be one of the most painful afflictions known.

The origin of TN is unknown, but it is often attributed to abnormal blood vessels that compress the nerve, multiple sclerosis, or tumors. It usually takes from five to seven years for most patients to receive a correct diagnosis. There is no known absolute cure for TN, but there have been tremendous advancements in surgical and medical treatments that have benefited many. Initial treatment of TN usually begins with the use of anti-seizure drugs, but should the medication be ineffective or if it produces undesirable side effects, neurosurgical procedures are available that may relieve pressure on the nerve or reduce nerve sensitivity.

The TNA (Trigeminal Neuralgia Association) was founded in 1990 by TN patients and their families. Until then, most TN patients suffered in isolation and fear and knew very little about the disorder and its treatment. And, because many who do not have classic TN have turned to TNA for help, the Association mission now includes assisting and supporting those affected by related facial pain as well.

TNA’s mission is to support and educate patients and practitioners and to advocate for patients and facial pain research. We have 75 support groups across the country as well as telephone support contacts to assist people in pain. In addition, the TNA hosts a biennial national conference designed for patients and their supporters, support group leaders, neurosurgeons, neurologists, oral and maxillofacial surgeons, dentists, nurses, health-related professionals, and medical industry representatives, who have an interest in the management of facial pain related to trigeminal neuralgia and related facial pain conditions.

53Table of Contents

Part One: Characteristics and Causes of Trigeminal Neuralgia
   I. An Overview of Trigeminal Neuralgia (Tic Douloureux)
   II. Anatomy of the Trigeminal Nerve
   III. Types of Trigeminal Neuralgia and Their Causes
       A. Introduction
       B. Typical Trigeminal Neuralgia
       C. Atypical Trigeminal Neuralgia
       D. Pre-Trigeminal Neuralgia
       E. Multiple-Sclerosis-Related Trigeminal Neuralgia
       F. Secondary or Tumor Related Trigeminal Neuralgia
       G. Trigeminal Neuropathy or Post-Traumatic Trigeminal Neuralgia
       H. "Failed" Trigeminal Neuralgia

YOUR COMPLETE GUIDE TO TRIGEMINAL NEURALGIA
Anthony M. Kaufmann & Mitesh Patel
Centre for Cranial Nerve Disorders, University of Manitoba, Health Sciences Centre
Winnipeg, Manitoba, Canada

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Begin or choose a section below.

Part Two: Treatment of Trigeminal Neuralgia
   I. Overview of Treatments
   II. Medications
       A. Introduction
       B. Carbamazepine (Tegretol®)
       C. Phenytoin (Dilantin®)
       D. Baclophen (Lioresal®)
       E. Gabapentin (Neurontin®)
       F. Trileptal (Oxycarbazepine®)
   III. Surgery
       A. Overview
       B. Microvascular Decompression Surgery
       C. Nerve Injury/Destructive Procedures (Rhizotomies)
           1. Introduction
           2. Types of Rhizotomies
               a. Percutaneous Glycerol Rhizotomy
               b. Percutaneous Balloon Compression Rhizotomy
               c. Radiofrequency Rhizotomy
               d. Stereotactic Radiosurgery (Gamma Knife)
               e. Peripheral Trigeminal Nerve Blocks, Sectioning and Avulsions
                f. Microsurgical Rhizotomy

56 TRIGEMINAL NEURALGIA

Trigeminal neuralgia (TN) is paroxysmal triggered face pain. Most patients respond very well to radiosurgery with the Gamma Knife, which is one of the best standard treatments for this condition.

Symptoms
Trigeminal neuralgia is characterized by sudden bursts (paroxysms) of face pain. These bursts are often triggered by a light touch around the mouth or face or by talking, eating, or brushing one's teeth. The pain sometimes gets worse or better for periods of weeks or months. The pain is in the areas supplied by the trigeminal nerve: the cheeks, jaw, teeth, gums, lips and less often around the eye or forehead. Usually pain occurs on just one side of the face, but in five to 10 percent of patients, pain occurs on both sides of the face, although not at the same time. The pain responds to Tegretol (carbamazepine is the generic name), but sometimes the dose has to be increased and unpleasant side effects can occur.

Atypical features may coexist with some of the previously described symptoms. These atypical features may include a constant pain that is not always triggered by light touch. Patients with constant pain and TN are sometimes diagnosed as having atypical trigeminal neuralgia. Gamma Knife radiosurgery and other treatments for TN usually relieve the sharp electric-like pains that are triggered by light touch, but are less likely to relieve the constant, untriggered pains.

Incidence and Prevalence
Approximately 14,000 people develop TN each year in the United States; about 140,000 people have the condition. Trigeminal neuralgia is more common in patients with multiple sclerosis.

Cause
The cause of trigeminal neuralgia is not always certain. Approximately five percent of patients have a tumor pressing on the trigeminal nerve where it leaves the brain, while other patients have a blood vessel that presses on the trigeminal nerve, close to the brain. In some patients the cause cannot be determined.

Approximately five percent of patients with trigeminal neuralgia have multiple sclerosis. Patients with TN and multiple sclerosis are generally younger, and tend to first experience TN symptoms while in their mid 40s. These patients are more likely to have pain on both sides of the face (bilateral trigeminal neuralgia) and often have other neurological abnormalities, such as weakness or numbness in the arms or legs, dizziness, unsteadiness and double vision. Most patients in their 40s and 50s who have trigeminal neuralgia do not have multiple sclerosis. Patients who have TN but not multiple sclerosis tend to first experience TN symptoms while in their mid 50s.

Diagnosis
In addition to a thorough history and physical examination, magnetic resonance imaging (MRI) of the brain is recommended. This procedure helps identify a brain tumor in the rare cases in which it is present along with TN. It may also help to diagnose multiple sclerosis. Often when the MRI is performed, some contrast material is injected into the vein so that the appearance of a small tumor, blood vessel, or other structures in the brain can be enhanced and made easier to detect.

Nonsurgical Treatment
There are some patients who have very mild face pain that may subside and even disappear without treatment. For severe pain, medications, especially Tegretol, are often highly effective. Tegretol can cause many side effects including sleepiness, forgetfulness, confusion, drowsiness, dizziness and nausea. Tegretol can also cause more serious problems such as bone marrow suppression, which can lead to anemia or a decrease in the number of white blood cells. A low white blood cell count can predispose a patient to contracting an infection. Rarely, these problems are life threatening. Blood counts must be monitored in order to lessen the chance of these complications occurring. Tegretol can also harm many other parts of the body, so patients who take this medicine must be under careful medical supervision. Tegretol interacts with many medications, so patients must advise their doctor of all the medications they are taking. Elderly patients and those with multiple sclerosis are more likely to experience the side effects of Tegretol.

There are other medications that can be used either alone or in combination to control trigeminal neuralgia pain. These are usually less effective than Tegretol. They include Lioresal (baclofen), Dilantin (phenytoin), Klonopin (clonazepam), Neurontin (gabapentin), or Lamictal (lamotrigine). All of them, except baclofen, are also used to prevent seizures.

Surgical Treatment
A surgical procedure is recommended for patients who continue to experience severe pain or side effects from medications. In the past, patients with TN did not consider neurosurgical options until the pain or medicines became unbearable, because surgical procedures carried higher risks. Now that surgery is safer, and especially with GKRS, which is not only highly effective but safer than any of the other procedures, patients no longer have to wait to be in agony in order to undergo neurosurgical intervention.

There are five important neurosurgical procedures. Each is effective, but not always, and occasionally has to be repeated. These procedures are: Gamma Knife radiosurgery (GKRS), radiofrequency electrocoagulation (RFE), glycerol injection (GLY), balloon microcompression (BMC), and microvascular decompression (MVD). All of these procedures treat the trigeminal nerve at around the same place, close to where it leaves the brain.

Gamma Knife radiosurgery is the most recent and least invasive neurosurgical treatment for trigeminal neuralgia. Of all the surgical procedures, it is least likely to cause complications and uncomfortable new facial sensations (dysesthesias).

What is Gamma Knife Radiosurgery?
Gamma Knife radiosurgery is a method for treating certain problems in the brain without making an incision. Two hundred-one beams of cobalt-60 radiation are focused precisely on a specific region in the brain. In the case of TN, the target area is the trigeminal nerve, just where it leaves the brain. The treatment does not require general anesthesia, and the patient stays in the hospital for less than five hours.

Who is a candidate for Gamma Knife Radiosurgery?
Any patient with trigeminal neuralgia who has pain or has difficulty with the medicines used to relieve the pain is an excellent candidate for GKRS. The patient's age or medical condition does not affect the decision to have GKRS. Even the elderly or medically infirm can undergo this treatment. Patients who are receiving anticoagulants for other medical conditions do not have to stop or reverse the anticoagulation therapy prior to GKRS. Those who have had previous procedures for TN may also undergo GKRS. Patients who are concerned about the possibility of numbness are particularly good candidates for GKRS, because the chance of postoperative numbness occurring is very small. Patients who poorly tolerate medicines given for sedation and relief of pain during a procedure are also very suitable for GKRS because these medications are not necessary.

What results can be expected from GKRS?
Excellent or good pain relief occurs in approximately 85 to 90 percent of patients. Onset of pain relief may occur one day to four months after the procedure. About half of patients will experience pain relief within four weeks. Recurrent pain occurs within three years in 10 percent of patients. Patients with TN and multiple sclerosis are less likely to respond to GKRS than those without multiple sclerosis, although they also may be helped by the procedure. Gamma Knife radiosurgery can be repeated, but not until at least four months after the original procedure.

What are the complications from GKRS?
Major complications have not been reported. Additional numbness in the face or new facial sensations occur in less than 10 percent of patients. There are theoretical possibilities of delayed complications such as brain damage or brain tumor formation, but these are rare and have not been reported to occur in any patients treated for trigeminal neuralgia.

Gamma Knife radiosurgery was first performed in Sweden in the 1950s, but few patients were treated for TN. The Gamma Knife has been used in the United States since 1987, and most cases of TN have been treated during the past five years. Although there is not much information on long term effects, initial and medium range follow-up suggest that GKRS is not only effective but also very safe.

Linear Accelerator Radiosurgery
There is another form of radiosurgery, called LINAC (Linear Accelerator) radiosurgery. It uses high-energy X-rays delivered by a sequence of arcs, and is very different from GKRS. Only a few cases of TN have been treated with LINAC radiosurgery, and there are no reports on these cases in peer-reviewed journals. Unlike GKRS, LINAC radiosurgery has not been demonstrated to be an effective and safe treatment for trigeminal neuralgia.

Radiofrequency Electrocoagulation, Glycerol Injection and Balloon Microcompression
These procedures are performed through a needle that is inserted into the face and directed, under X-ray guidance, toward the trigeminal nerve. All of these procedures partially damagee facial numbness, which is sometimes very painful. Major complications, such as bleeding or infection in the brain, are rare but can be devastating when they occur.

Microvascular Decompression
Microvascular decompression is a major neurosurgical procedure in which the skull is opened. During the operation, which requires general anesthesia, the surgeon sees the nerve. If he or she finds a blood vessel pressing on the trigeminal nerve, a soft piece of material will be placed between the blood vessel and the nerve, thus lifting the blood vessel away from the nerve. This operation carries greater risks than the other procedures do, and these risks, although infrequent, include possible death, stroke, bleeding, infection, inflammation of the surface of the brain, facial weakness, hearing loss, facial numbness and pain.

Summary
Gamma Knife radiosurgery is a major advance in the treatment of trigeminal neuralgia, an otherwise agonizing condition characterized by paroxysmal triggered face pain. Gamma Knife radiosurgery not only relieves the pain as well as the other neurosurgical forms of treatment, but it does so with fewer complications.

The Gamma Knife is the only radiosurgical machine for which positive results of trigeminal neuralgia treatment have been published in peer-reviewed journals.

Dr. Brisman is a graduate of Harvard Medical School and served as Chief of Neurosurgery US Army 24th Evacuation Hospital in Vietnam. He has performed more than 1400 surgical procedures on TN patients and more than 125 radiosurgical procedures. He serves on the Medical Advisory Board to the Trigeminal Neuralgia Association. He may be reached at Columbia Presbyterian Medical Center in New York City at +212-305-5285 or by e-mail at: rb36@columbia.edu.

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:

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)

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)

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 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

Trigeminal Neuralgia

What is trigeminal neuralgia?

What causes trigeminal neuralgia?

Treatment

Pharmacological

Surgical

Who should I contact?