My name is Koo.  I have trigeminal neuralgia.  I live in Vancouver, Canada, and there is no support group here.  However, if there are interested people who also suffer from trigeminal neuralgia, please let me know.  We'll start one together.  I am still waiting for an MRI, which my terrific doctor (Dr. Foti) needs before he can tell me if I need surgery.  Meanwhile I'm taking medications.  No 23 year old wants to put her life on hold while taking medications (each of which have side effects), and wondering what might be causing this to happen.  So far I have been told it might be a tumor, MS or just TN all on it's own.  This page is directed particularly to younger patients.


from our family to yours, all the best for the coming year


 
 
 

-  This in a nutshell, is Trigeminal Neuralgia
-  MY TN STORY
-  CONTACT
 

2003 -- Good news, turns out I do not have MS.  Neurontin is working very well for me.  That leaves surgery as a possibility if the pain returns, but right now I can start makig plans again.   my wedding in June walking down the Isle with dad and mum  2003 -- more good news, I'm having a baby.  I've had to stop the neurontin, but the TN has eased up a lot on its own.
2003 -- Baby Maya is born, healthy at almost 10 pounds! 2004 -- I am the mother of this beautiful baby 2004 -- some of the pain is back, when I stop nursing I will have to take the neurontin again
2005 -- pain is worsening a bit, trying to do without medication

Definition

Tic doloureux: A painful often acute jabbing sensation over the one cheek of the face most commonly from damage to the trigeminal nerve as it enters the brain. Fairly common in MS. Also called Trigeminal neuralgia.

Trigeminal neuralgia (also known as tic douloureux) is a facial pain syndrome that usually develops in individuals over 50 years old. Its incidence is 4/100,000, and it is the most common facial pain sydrome in
this age group. The character of trigeminal neuralgia is classically lancinating or "electric-like shocks" lasting a few seconds but of a debilitating, intense nature. They are usually on one side of the face, most often in the area of
the upper cheek down to the level of the jaw, the maxillary (V2) and mandibular (V3) branches of the trigeminal nerve. The ophthalmic division (V1), transmitting sensation from the skin of the forehead and the eye, is less commonly involved. The trigeminal nerve is also known as cranial nerve V. It transmits sensation from the face, eyes and teeth and controls the muscles of mastication (chewing).

Painful attacks may occur spontaneously but are more often associated with a specific stimulus in a "trigger area." Common trigger points are the eyebrow for ophthalmic division pain, the upper lip for maxillary division
involvement, and the lower molar teeth for mandibular division pain. Sensory stimuli by touch, cold, wind, talking or chewing can precipate the attacks. Pain-free intervals last for minutes to weeks, but long-term
spontaneous remission is rare. The attacks cease during sleep but often occur upon arising in the morning. This constellation of symptoms provides the diagnosis.

The short answer is, "No one knows." There is considerable Evidence, however, that vascular compression of a nerve root is the cause. This may be due to branches of the superior cerebellar artery, basilar artery, or
local veins compressing the trigeminal nerve root. In younger patients, trigeminal neuralgia can be caused by tumors in the region of cranial nerve V or (more commonly) by multiple sclerosis. These entities must therefore
be ruled out. Imaging studies, CT or MRI with and without contrast enhancement, should be performed on every patient with trigeminal neuralgia. Often, elongated and tortuous vessels can be seen and tumors of the region need to be excluded as a cause for the syndrome.

Treatment

Pharmacological
The primary treatment of trigeminal neuralgia is pharmacological. Most patients obtain relief, at least initially, within 30 minutes of administration of carbamazepine (Tegretol). This drug does have side effects mostly bone marrow depression and liver damage and patients should be monitored by their physician. Some individuals may also respond to phenytoin (Dilantin).
Surgical
After pharmacologic failure, surgical intervention is necessary. Surgical options include blocking the trigger point with local blocks, neurectomy block of the nerve branches, percutaneous rhizotomy of the trigeminal ganglion (destruction of the site of sensory nerve cell bodies just inside the skull and dura), and microvascular decompression of the nerve root zone. Decisions on which treatment is best for a given patient must be based on the nature of the pain, the health of the patient, imaging findings and consultation with the neurosurgeon.

What is Trigeminal Neuralgia?

Trigeminal neuralgia (TN -- tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw.  A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs.   Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides.  Onset of symptoms occurs most often after age 50, but cases are known in children and even infants.
Something as simple and routine as brushing the teeth, putting on makeup or even a slight breeze can trigger an attack, resulting in sheer agony for the individual. Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. Initial treatment of TN is usually by means of anti-convulsant drugs, such as Tegretol or  Neurontin. Some anti-depressant drugs also have significant
pain relieving effects.  Should medication be ineffective or if it produces undesirable side effects, neurosurgical procedures are available to relieve pressure on the nerve or to reduce nerve sensitivity.  Some patients report
having reduced or relieved pain by means of alternative medical therapies such as acupuncture, chiropractic adjustment, self-hypnosis or meditation.

 

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Koszima (Koo) Mair, 2004   With husband Jayde and baby Maya

Koo's Story MY TN STORY: Koo Mair, Richmond, B.C.       I was 20 years old and was sitting at home after work when I first felt it. I was convinced right away that I needed to see a dentist. I did not have dental so I decided that the next day I would go to the doctors clinic to see if they could help me get emergency dental. The pains happened many more times that night, bringing me to tears.      So I went to the clinic. There the doctor said he could help with the dental if it was in fact a dental emergency.  I was asked to describe my pain and he poked at my teeth. Based on the description of my pain he said that I did not have a dental problem. I was shocked. He then told me that I have Trigeminal Neuralgia, but without any explanation he gave me VIOXX commonly used for arthritis and sent me home. I assumed that TN was like the flu it would heal in a matter of time and I would be fine.      The pain gradually got worse and much more frequent so two days after the clinic I decided to go back. This time it was a different doctor. As soon as the doctor came in I started to cry. I explained that I could no longer handle the pain and if something wasn’t done I was afraid that I could hurt myself. The doctor quickly left the room. When she returned she explained TN to me and that she was almost positive this is what I was suffering from. She sent me away saying that a Neurologists office would contact me.      One day later the neurologist contacted me. I went in shortly after and was immediately diagnosed. He was positive TN was what I have. I was given a mix of Tegretol and amitripiline ( an antidepressant used for chronic pain). The pain never really went away and was worse some days than others. Ice cream had to be given up completely because that was the biggest trigger for my pain.      Eventually after frequent appointments discussing my pain and the severe side effect from Tegretol, I went on Neurontin. Much better but the pain never went away completely. I lost some friends who couldn’t understand that just because you can’t see it doesn’t mean it’s not there! As well I also lost my job. It made me stronger and I feel for those people that can’t be understanding to others..      Now I am not currently pain free, but I have faith that one day I will be. I am not on medications due to the fact that I just had a baby girl. Still the best medication for me was Neurontin and I will be going back to that as soon as I can. Koszima (Koo) Mair

CONTACT INFORMATION: Head Office and Lethbridge Support Group  Marion Guzik  TNAC President  1514 Lakemount Blvd. South  Lethbridge, AB  T1K 3K4  Phone: 403-327-7668    EMAIL: mguzik@telus.net TNAC Newsletter: Patty Moyer, TNAC Editor P.O. Box 973 Coaldale, AB T1M 1M8 Phone: 403-345-6262  EMAIL: phmoyer@telusplanet.net Additional TN information:  Try going to www.tnac.org trigeminal neuralgia support group trigeminal support - uk NINDS - information on trigeminal neuralgia emedicine.com - Trigeminal Neuralgia

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