October 2007
Canada TNA
Canada TNA (CaTNA) is a network of support groups and individuals who are dedicated towards sharing information and support to people who have Trigeminal Neuralgia and other facial pain. Membership in CaTNA is $10 per year. Newsletters are available free by e-mail, and for $6 per year by Canada Post. Contact: Canada TNA, c/o Jan Williams; 15 Everstone Dr. SW, Suite 207; Calgary, AB, T2Y 5B5. email: calgary@catna.ca; Phone: Phone: (403) 295-0987. Canada TNA is associated with the TNA Association in the USA.
Greetings to all!
I hope everyone has enjoyed their summer and is now ready for the fall and the rest of the year.
If you can, we need your help. There are people across the country with TN who are feeling lost, isolated and alone. If you can reach out to make a phone call, to drop someone a note or to host a coffee meeting in your community, please contact us.
The Calgary Group is delighted to have Dr. Kaufmann come to speak to us in October. If you want to join us for this seminar and need help finding accommodations, contact me.
Jan
Disclaimer: The information in this newsletter is not intended to diagnose or offer advice on treatment of TN. Its sole purpose is to provide information so that you, working with your doctor, can make informed decisions on your own care.
Face Healing: Reflections on Treating Trigeminal Neuralgia
Saturday, October 20, 2007 – 2 pm
Foothills Hospital Auditorium
Calgary,
Dr. Anthony Kaufmann
MD, BSc.(Med), MSc., FRCSC
Associate Professor (Neurosurgery)
Director, Centre for Cranial Nerve Disorders
University of Manitoba
Bring your friends, relatives and anyone who is interested in learning more about TN. Everyone is Welcome
Support Group News
Everyone is welcome to attend a support group meeting. You do not need to be a member of CaTNA although we will be happy to have you join us. Our doors are open to TNAC members, TNA members and those who have not joined any organization.
Alberta
Calgary: The Calgary Support group meets once a month. We are looking for a new location for our meetings. Contact Jan for information 295-0987 or calgary@catna.ca. The next meetings will be:
Saturday, October 20, 2 pm
Foothills Hospital Auditorium
Guest Speaker: Dr. Kaufmann
Saturday, November 17, 2 pm
Location to be determined
Saturday, Dec 1, 2 pm
Location to be determined
Guest Speaker: Dr. Cory Toth
Ontario
Thornhill
The group meets the last Sunday of each month at the Thornhill Community Centre, 7755 Bayview Ave
Oct 28, 9:30 am
Nov 25, 9:30 am
Contact Kathy (905) 853-9849 or Sandra (905)284-9215 or by e-mail Toronto@catna.ca
West Toronto
Contact Valerie at (416) 588-4951 or westto@catna.ca for dates and locations
Newmarket
Contact Kathy (905) 853-9849 or Sandra (905)284-9215 or email Toronto@catna.ca for locations and dates.
Saskatchewan
Saskatoon
Contact Dee at (306) 382-5666 or by e-mail at saskatoon@catna.ca for dates and locations.
Watch the Saskatoon Star Phoenix for Dee’s story. It should be published in late September.
Regina
Contact Faye (306) 751-0761 or by e-mail at regina@catna.ca for dates and locations.
Sept 29th 10 am – Wascana Rehab Center
Faye has arranged for a guest speaker: A pharmacist will be there to answer any questions about the various drugs used to treat TN.
Chris’ Story
ME TN
No, that is not an incorrect title. In the eight years of increasing pain until I found relief from Trigeminal Neuralgia, the TN became very much me. I have no written diary, only memories, some vivid; and memories are notoriously subjective and unreliable! Recognize also that most of the experts I consulted had a range of opinions varying from “You cannot possibly have those symptoms” all the way to “You appear to have atypical TN”. In my opinion, most of us TN sufferers are ‘atypical’!
After the fact, I realized that my TN had started in Athens more than ten years ago. On the morning of my flight home I was quite ill, and checked out most of the washrooms on the way to my flight. Also, I had a burning pain on the right side of my upper jaw that was definitely not toothache—I have always had bad teeth and I know toothache!
The pain got worse over the next few weeks, reached a plateau and then subsided and disappeared. A few months later it was back! I went into a round of pain specialists, neurologists, and others expert in pains of the head and face, and then the pain disappeared again. Some experts were openly sceptical that I could have the symptoms and intense pain that I described. One prescribed an M.R.I. and, in the months of waiting for the M.R.I., the pain came back yet again. My dentist had become suspicious that I had some form of TN and, while I was visiting someone in hospital, I saw a notice of a lecture about facial pain to be presented by a neurosurgeon. At the lecture I learned more about TN and heard for the first time of the MVD procedure, (MicroVascular Decompression). After the lecture, the speaker gave me his business card, described the TN support groups in North America that could provide factual information, e.g. the book “Striking Back”, and introduced me to the founder of the Canadian TN support network. The M.R.I. showed no abnormalities.
Two years or more after the first bout of pain, most of the medical profession I met still did not seem to know what to make of my problem, and the periods of remission were getting shorter and the periods of pain longer. I was still “atypical” in that cold, and cold wind, on my face caused no discomfort and strenuous exercise would give me a few hours pain-free. However, trigger points near my right ear, eye and nostril were sensitive to the slightest touch and produced eye-watering pain that felt like an electric shock from a hot branding iron. Three years on and with my life altered by recurring pain, someone decided to try Tegretol to prove that I was not just atypical but in fact did not have TN. The pain responded to Tegretol. I really did have TN!
More increasingly painful years ensued, the Tegretol dose was increased and my reflexes suffered its effect. Then one of the periodic blood tests to check for side effects of Tegretol came back positive and I was switched to Neurontin. In spite of the medication, at times pain prevented me from eating, or even talking. One such painful bout occurred during a church meeting, and two of the participants spontaneously put their hands on me and prayed—and nothing happened! On the way home an hour later I realized the pain was subsiding. There followed two glorious weeks with no pain and reduced medication before the pain gradually returned. I used this short period of grace to reconsider and to learn more about TN, and about the alternative treatments, outcomes and related risks. The medical view at that point was that medication was much better than the risks associated with an MVD. Medication certainly dulled the pain but I felt I was becoming a zombie. Considering my quality of life, I was seriously seeking an MVD and, given the acknowledged risks of the procedure, I wanted to have it done by someone with a long history of successful operations—the neurosurgeon whose lecture I had heard some years before!
Fate intervened and I had to have a serious operation not related to the TN, and this delayed my eligibility for an MVD. Some two years later, on a cold January day in Winnipeg, I finally had the MVD but not before the surgeon briefed me and made sure I understood the associated risks. I woke up pain-free but with a slightly stuffy feeling behind my eyes. Within a week I was able to fly back to Calgary without incident, and to start tapering off the Neurontin. The stuffiness persisted for a few weeks but otherwise I felt as though I had stepped back eight years and into good health.
That was over three years ago now and I have needed no pain medication since the MVD. Now and then I am aware of an echo or phantom of the old pain, but it is very slight and nothing like even an ordinary toothache, nor is it from my teeth. Now it is just ME, without the TN.
Chris is a member of the Calgary Group.
Cooking hint
If you have trouble chewing food, there is an option for cooking meat that is more tender and in the opinion of some nutritionists, better for you.
According to Jim Marlowe, Nutritionist at Dr. Mercola's Optimal Wellness Center in the Chicago area, you should cook your food at a top temperature of 225° F. As you know, the standard cooking temperature for most foods seems to have become around 350° F. But by cooking something at that temperature, you actually damage the molecular structure of the food. Jim says that a far better temperature for cooking is 225° F. Bear in mind, this does affect the cooking time somewhat. At 225°F, you'll need to add approximately 50% over and above the original cooking time, in essence, 150% of the original cooking time in total.
EXAMPLE: If a food would normally cook at 350° F for 1 hour, it will need 1½ hours to cook at 225° F.
ABCs
Prime Time
On the show “Primetime: Medical Mysteries” Sept 18th, the section titled “You be the Doctor” featured a man called Tony. Throughout the show they gave a series of symptoms and people were invited to guess his diagnosis.
Poor Tony, a healthy man in his 40s, began experiencing pain in his throat that became excruciating after he bit into a tuna fish sandwich one day. He went through a number of evaluations and tests before they finally came up with the diagnosis.
I wonder how many people reading this newsletter were able to diagnose TN? The segment is available on-line: www.abcnews.com.
Another TN story
(This is a daughter’s story about her Dad, his experience with Tegretol and then the MVD)
Carbamazepine's (aka Tegretol) primary use is in controlling the fits caused by epilepsy. In addition, it is indicated in the treatment of psychiatric disorders and is also used in the treatment of Trigeminal Neuralgia (TN).
My experience with this drug is not about me but my father, and his struggle with both TN and Tegretol.
WHAT IS TN?
The Trigeminal nerve is known as the 5th Cranial nerve, and there is one on both sides of the face. TN has been identified as the worst possible pain known to man (and women).
TN is an unusual illness (but not unheard of) in the under 50's, and is notoriously difficult to treat. TN is signified by short, horrendous stabbing pains on one side of the face, and can affect the chin, gums, cheek and I have heard some people say also the forehead.
About 5 years ago, following a visit to the dentist, my father started getting terrible pains in the side of his face, which were initially put down to problems with his teeth. He tried dental treatment, painkillers and antibiotics, but nothing worked. After ruling out all these problems, he was eventually diagnosed with TN, momentary relief, until he started researching the problem, and despite being prescribed Tegretol, the pain only diminishing minutely.
TEGRETOL AND ITS EFFECTS (Apparently most people suffer few side effects with this drug - maybe my Dad was just unlucky)
The side effects of this drug, quickly became apparent. My formerly very fit relatively active father became slow, absent minded with slurred speech. His gait suggested he had suffered a stroke and his hands and fingers were swollen to three times their normal size and covered in eczema worse than anything I have ever encountered, despite suffering badly myself for 30years+. He also became a shadow of his former self, losing about 50 pounds.
After about 9 months of struggling and deteriorating in front of our eyes, he persuaded the doctor to try surgery. I don't imagine I need to point out the finer details of the risks associated with cracking open the skull from top to bottom and performing invasive surgery, but he was firm that he did not want to suffer this pain for the rest of his life, and that the risks were worth taking. Even surgery is no guarantee of freedom from pain as I understand it, and the patient is given a timescale of about 5 full years, after which it is unlikely the pain will come back.
He had his surgery, and was then weaned off the Tegretol. He was not allowed to drive for three months after surgery, and spent a few days in intensive care, but other than that, he suffered no problems, his slurred speech went, and his gait returned to normal, fine apart from a lovely scar right down the back of his head.
We had a scare a year ago when we thought it had come back, but fortunately it was severe toothache and now his five years without a return have been and gone
Some people thought he was brave to go through the operation, yes he was, but in truth, I could not feel his pain, but think the decision was made because he could not have gone on living with that intense, never ending level of pain, combined with the horrendous side effects of the Tegretol. Talking to him about it recently, he says the pain was so bad, had they have refused to operate on him, he thinks he could have done something he would have regretted.
If you know someone with TN, treat them with care, they really are suffering.