Volume 5, Issue 3

March 1, 2005 

Tegretal is used primarily as an anticonvulsant and antimanic agent. It is also used to treat to treat Trigeminal Neuralgia and usually diminishes or relieves the TN pain within 24 to 48 hours.

The initial daily dosage should be small; 200 mg taken in 2 doses of 100 mg each is recommended. Total daily dosage can be increased by 200 mg per day until relief of pain is obtained. This is usually achieved at a dosage between 200 and 800 mg daily, but occasionally up to 1200 mg per day may be necessary. As soon as relief of pain has been obtained and maintained, progressive reduction in dosage should be attempted until a minimum effective dosage is reached. Because trigeminal neuralgia is characterized by periods of remission, attempts should be made to reduce or discontinue the use of carbamazepine at intervals of not more than 3 months, depending upon the individual diagnostic tool to confirm the diagnosis.

The absorption of carbamazepine in man is relatively slow. When taken in a single oral dose, peak plasma concentrations of carbamazepine occur within 4 to 24 hours.

Complete blood counts, sodium levels and liver tests should be carried out before treatment is started. Suggested guidelines for monitoring are weekly for the first month, then monthly for the next 5 months, thereafter 2 to 4 times a year.

The list of side effects is quite long – this is a partial list only. Any new or unusual symptom that appears while on Carbamazepine should be discussed with your doctor.

• aggression and agitation

• allergic reactions

• Anemia and blood disorders

• Bleeding - unexplained bleeding

• Blood clots

• Blood Pressure problems – either high or low

• Bone problems - osteoporosis

• Breathing difficulty

• Confusion, dizziness and sleepiness

• Constipation or diarrhea

• Coordination - difficulty with coordination

• Depression

• Double vision and other eye problems

• Headache

• Increased sensitivity of skin to sunlight

• Involuntary jerky movements of the eyes

• Liver problems

• Low sodium in the blood

• Muscle pain or weakness

• Pins and needles - numbness or tingling in the hands or feet

• Raised cholesterol

• Restlessness

• Ringing in the ears

• Speech - slowing or slurring of speech

• Swelling of limbs

• Tremor

• Weight gain

Drug Interactions:

Carbamazepine may adversely affect the reliability of oral contraceptives; patients should use some alternative, nonhormonal method of contraception.

Tolerance to alcohol is reduced.

Any drug that is processed by the liver can be affected by carbamazepine.

You should not eat grapefruit or drink grapefruit juice while on this drug.

I do not have too much to report this month, but I want you to know that we are waiting for a reply from Dr. Kaufmann regarding the Medical Cards that were suggested in the February Newsletter. As soon as this info is received, the TNAC will have these cards printed and laminated and they will be mailed out to you.  This applies to paid up members only.  If you wish to receive a card, please let me know so that I do not get too many printed up, as this could be a costly adventure.

Until next month, Happy Easter Everyone.

Marion

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on March 15, 2005 at Confederation Park Senior Centre; 2212 13^th St. NW. Contact Jan at 403-295-0987 or jan.williams@shaw.ca .

We will have a guest speaker at this meeting – a Pharmacist to talk about current drugs and those under development. At the April meeting we will have a Chiropractor speak to the group.

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, March 12, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge, Alberta. Contact Marion Guzik at 403-327-7668.

The Toronto Support Group will meet on April 3, 2004, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. Contact Dana Lavrence (905-886-7563), Kathy Somers (905 853-9849) or Sandra Arangio (905 284-9215)

Next Meeting, April 9, 2005 at 1:30 pm Place: G.F. Strong Rehab Centre, 4255 Laurel St., Social Services Seminar Room # 189, Main Floor. For further information please contact: Ann Hopkins - Ph. 604-732-1673 - email: annhopkins@shaw.ca

Ann Hopkins – Vancouver, BC

Norma McAllister – N. Vancouver, BC

Ileane Paquin – Hope, B.C.

Barbara Geiger- Toronto, ON

Donations:

Ann Hopkins – Vancouver, B.C

Nadia Lewis – Richmond, B.C.

Hazel Erdmann – Medicine Hat, AB

Donations to the TNAC are gratefully received. Your monetary support helps defray the cost TNAC News, information packages sent out, supplies, postage etc.

Please make your cheque payable to Trigeminal Neuralgia Association of Canada and mail it to:

1514 Lakemount Blvd South

Lethbridge, AB, T1K 3K4.

Income tax receipts will be provided.

MEDITATION AND DEALING WITH PAIN

        Whenever prolonged pain in our body occurs, psychological reaction to it can have great effect on managing the pain itself, in terms of its intensity and duration.  

        Meditation was practiced for many centuries and it is known that it can calm the body and mind as well as keep us very focused. Today the Neuroscience and Buddhists are trying to interact together and use the potential benefits of meditation to see if the brain can change its internal, mental signals and functioning.

          I was fortunate to listen in December of this year at IMS (Insight Meditation Society) in Barre, Massachusetts to Dr. Jon Kabat-Zinn, the Founder of Stress Reduction Clinic and the Centre for Mindfulness in Medicine at the Massachusetts Medical School. His mindfulness based Stress Reduction Programs are known worldwide and are finding application in hospitals, schools, inner-city clinics, prisons, corporations, etc. His approach is that by practicing the mindfulness we can learn to become less stressed and reactive which can have positive impact on our immune system and emotional balance.

He also spoke about the newest collaboration with Professor Richard Davidson, University of Wisconsin, working with monks who have practiced meditation for years, in order to see if this may impact the brain functions. Using the brain scan (FMRI) Dr. Davidson pinpointed regions that were active during the meditation. 

        During the brain scans monks meditated and their brain FMRI showed an increased activity in the left prefrontal cortex, which is the centre for positive emotions. (Happiness, joy, …). This activity overwhelmed the right prefrontal cortex activity, which is the centre for negative emotions (anxiety, anger, fear, …).

      The study will be published soon in the Proceedings of National Academy of Science. As reported by Sharon Begley in the Science Journal, it says in summary:

    "That opens up the tantalizing possibility that the brain, like the rest of the body, can be altered intentionally. Just as aerobics sculpt the muscles, so mental training sculpts the gray matter in ways scientists are only beginning to fathom."

      These results may provide yet a new hope for us, TN sufferers.

 For those that may be interested in meditation I am enclosing the simplified basic meditation instructions:

SIMPLE MEDITATION INSTRUCTIONS:

The meditation starts by sitting in posture that is comfortable for you and you body (floor, chair, meditation pillow,).

Close your eyes and take a moment or two to just settle down, don’t DO anything.

Take a few a deep breaths; notice the breath IN – breath OUT.

Try the notice the sensations and quality of your breath (long-short, deep-shallow, worm-cool).

During this time the thoughts will come and go, the sounds will come and go.

If you feel lost in your thoughts bring attention to your breath again. Try to feel sensations in the body (tingling, pressure, pain) as it is moving in and out of you awareness.

Feeling sensations in the body is the first step in developing mindfulness.

When you attention wonders away from the breath, just notice it, and bring it back to breathe again and again... 

Try to do it every day for 30 min. (the best time is in the morning)  That way the body and mind will assume its natural ease.

GOOD LUCK! Dana Lavrence

The following question was received by Dr. Kaufmann from Kathy Somers – Toronto

"While attending our monthly meeting in Toronto an interesting question came up and several members were concerned. It seems one of our members who has had an MVD was at one of our Toronto top hospitals and she was to have an MRI and they wouldn’t do it because they didn’t know about TN. They thought the Teflon might explode and if we have had an MVD, we should not have an MRI. Would you please clarify this for us? We have all been talking about medical alert bracelets for our medications and felt if this was a problem the MVD should also be added. As always we value your time and knowledge and appreciate you more than we can ever express."

Dr. Kaufmann’s Answer:

Many patients with Teflon MVD implants have had MRIs without problem. I have not heard this to be a concern and continue to order MRI when necessary for patients after MVD.

Teflon is not a problem for the MRI but I found an interesting item concerning older tattoos and an MRI…..Jan

MRI is the abbreviation for Magnetic Resonance Imaging.

To better understand the risk MRIs pose to tattooed and pierced individuals it is important to know how Magnetic Resonance Imaging works:

The main component of the MRI system, or scanner, is a powerful magnet (measured in units called Teslas). This magnet causes your body's hydrogen atoms to align themselves in such a way as to receive radio signals from the magnetic resonance system. When your body receives these signals, it reacts by sending its own radio signals back to the machine. It is this radio frequency transmitted by your body that is computer-processed and turned into incredibly detailed images.

In short, an MRI uses a powerful magnet, low-intensity radio waves and computer technology to create detailed images of the soft tissues, muscles, nerves, and bones in your body. Like a normal magnet, an MRI Tesla magnet will attract anything that has iron in it. However, because a Tesla magnet is so powerful its attraction to metallic items will be exponentially stronger which increases the risk of injury if tissue should get in the way of the iron molecules and the magnet.

Though you may immediately think that piercings would be the primary concern, tattoos actually pose more of a risk to patients receiving MRI scans. Most professional piercing jewelry is made of implant grade surgical stainless steel which is non-ferrous and is considered MRI safe (titanium, wood, and acrylic are also all considered MRI safe); that said it is strongly recommended that you replace any metallic jewelry with acrylic, wood, or Teflon for such procedures to minimize the risk.

Iron oxide is a metallic substance found in some pigments of tattoo ink; because this ink is embedded under the skin it poses a greater risk because the iron particles will be strongly attracted to the Tesla magnet in the MRI machine. These days professional tattoo inks contain little to no iron oxide particles, however cosmetic tattoo ink (permanent eyeliner, lip liner, etc) often contains measurable amounts which have been shown to cause reactions to MRI scans. If this ferrous ink is embedded under your skin and you go for an MRI scan the magnet will attract the miniscule molecules of iron in the ink and they will try to exit your skin. This often causes tingling, discomfort, swelling, itching, and can lead to nerve damage if the iron oxide pigment particles are able to exit the skin shearing a nerve upon exit. As daunting as these sounds, reactions are quite rare and none have been officially documented stating permanent damage arising from a tattoo and an MRI encounter.

Should you ever be in need of an MRI scan make sure to either swap out your metallic jewelry for acrylic/wood/Teflon jewelry or remove it all together, and if you are tattooed notify the MRI technicians of the location(s) of your tattoo(s) and immediately notify them if you feel any tingling, numbness, burning, or other discomfort in the area of your tattoo(s) during the scan.

• I enjoy reading the newsletter, but I don’t care for the recipes.  They always seem completely out of place in a newsletter dealing with a serious medical issue.  … I’d rather run a smaller edition than fill one up with information that is not relevant to the purpose of the newsletter. You and your group are doing a great job and I hope you keep it up….without recipes and other completely non-relevant topics. -- K.S.

• Hi... I am a new reader to your newsletter and so far I am thrilled to have obtained this valuable resource. What a great job you are doing….. I am impressed with the layout, research, variety and overall character of the newsletter -- the recipes are fantastic – C.T.

• I thoroughly enjoy receiving the TN Newsletter.  I not only find it interesting and informative, but I especially benefit from the 'personal stories'. The medical information is extremely helpful and gives me hope that there is always 'relief' for the pain.  The newsletter is truly 'emotional' support for me. Although I enjoy the recipes; I haven't used any .  My preference is to focus on the medical findings ,  personal stories and coping methods for the physical and emotional sides of the illness. . . . R

I enjoy reading the personal stories the most.  K.V

• I very much appreciate the tremendous amount of work that goes into creating the newsletter and I always read it all, except the recipes. For me, that is not the place to have them. I think the letter should try to focus on TN; new progress in the field, what people are experiencing, "good news", etc. ….. R

• I like the idea of the newsletter posted to this web site It keeps us together in one place. It would be nice if each group submitted something to this newsletter. Recipes and jokes are fine. M.

• I like the news letter, its great. I know its lots of work, keep it up. – H.W.

• I enjoy the newsletters but I never read the recipes. I don't think they belong in a newsletter where people are looking for information to help their pain. C.

• I think the newsletter has much more credibility if it concentrates on (1) medical information and on (2) individual's input -- case histories, sharing. – A.H.

• I too enjoy getting the newsletter and thank the people who put in the effort to provide the news letter, before there was nothing keeping us posted!. I too like to read about medical updates and research and maybe the odd recipes and joke, doesn't hurt but would rather the emphases be the on medical and research and others with the TN and its problems S.D.

• I am not interested in the recipes but, I have no objections to a recipe section in the Newsletter. M.

• I enjoy the Newsletter and appreciate the effort of the editor and her helpers.

• I think that they are quite suitable, if enough room in newsletter. Usually someone finds them useful. I quite enjoy the newsletter. Thanks for your efforts. – J.M

• I enjoy reading the newsletter even the recipes although I've never used them…Keep up the good work with the newsletter. – M.M.

If my body were a car, this is the time I would be thinking about trading it in for a newer model.

I've got bumps and dents and scratches in my finish and my paint job is getting a little dull, but that's not the worst of it.

My fenders are too wide to be considered stylish. They were once as sleek as a little MG; now they look more like my mother's old Buick.

 My seat cushions have split open at the seams and my seats are sagging. Seat belts? I gave up all belts when Ben & Jerry's opened a shop in my neighborhood.

Air bags? Forget it. The only bags I have these days are under my eyes. Not counting the saddlebags, of course.

I have soooooo many miles on my odometer. Sure, I’ve been many places and seen many things, but when is the last time an appraiser factored life experiences against depreciation?

My headlights are out of focus and it's especially hard to see things up close.

My traction is not as graceful as it once was. I slip and slide and skid and bump into things even in the best of weather, and my whitewalls are stained with varicose veins.

It takes me hours to reach my maximum speed, and my fuel rate burns inefficiently.

But here's the worst of it - almost every time I sneeze, cough or sputter - I leak oil.

I'm so ready for a trade in! Anyone know where I can get a good deal?

Don says that since his MVD on Nov. 1, 2004 he is still pain and drug free and he feels great.

Four years ago I got Bell’s palsy with a very swollen parotid gland. I got BP 2 more times in 2003 (all three on the right side). The last BP caused constant problems. More and more symptoms appeared over the course of 2003-2004. I was eventually diagnosed with BP and TN. One doctor (ENT) thought that my constant ear pain might be from the 9th nerve as well (that made 3 nerves involved, the 5th, 7th and 9th). Then in June I began to have spasms when I swallowed. Liquid would go halfway down my throat, and then stop. After several seconds (seemed like forever!) the liquid would go down but the pain was truly terrible. Then in September I had a very strange and severe problem. I fainted in the dentist’s waiting room while waiting for my son. The following day I woke up unable to speak or swallow! Neither an ENT specialist nor Neurologist could diagnose the cause. This went on from September through the end of October with no improvement. I lost 20 pounds in that 6-week period.

I went to the Neurological Institute (NI) at Columbia Presbyterian Hospital in New York to get a diagnosis. They think I have a living virus in my nerves or that my immune system is now confusing my nerves for a virus I once had and is attacking those nerves. They also are concerned that I may have lymphoma around and in my parotid gland. They may choose to do a biopsy about that.

Turns out my right vocal cord was paralyzed as well as some of the muscles that control my esophagus. My neurologist thinks the paralysis is permanent. A muscle in my inner ear is also paralyzed. It controls the tympanic membrane which causes the hyperacussis I suffer from. My tear ducts also don't work anymore.

I am taking prednisone, Gabapentin, Tegretol, Lamictal, and Famvir, an anti-viral drug.

To end this story I would like to day that it pays to be persistent, get an advocate who can communicate for you when you can't, and don't hesitate to ask lots of questions. This is a difficult disease to live with.

Wendy

Since writing this story, Wendy has had a relapse. She again has more TN pain plus another attack of Bell’s Palsy. Her doctor is worried that her immune system might be compromised by a hidden cancer someplace in her body so she is currently waiting for a PET scan and taking drugs to boost her immune system.

Dear Patty,

     I read with interest your letter on the surgery you had for T.N. and can identify with most of what you are going through. My M.V.D. only lasted 6 months then came back with a vengeance.

     Late September 2004 I had a Glycerol Rhizotomy and all went well, no pain, till December when some of the numbness wore off then it seems like I have the nerve of one of my upper teeth gone. If I touch the tooth or the area on the roof of my mouth around the tooth I get this sizzling pain and I have trouble eating on that side of my mouth. I went to the dentist and there is nothing wrong with the tooth.

     I am running out of options where medication is concerned due to major side effects which have taken a severe toll on me. The past two years up to my surgery I was taking methadone plus Dilaudid which did not give me relief but did cause seizures which put me in the hospital twice.

All in all I am still far better off than I was. I am not on any drugs at the moment and want to stay off them as long as possible. One reason is that when I had the seizures from the combination of Dilaudid and Methadone the hospital informed the Motor Vehicle license department and my license was taken away. I have to wait a year now in the hopes that I will get it back. This I find very frustrating especially when my husband was ill and I could not even drive him to the Doctor.

   I am so glad we have the TNAC news to let us know what is happening and that there are other people out there who are suffering as well. I used to feel so alone as most people do not understand what it is or what you are suffering. After all you look normal.

     I hope and pray your T.N. does not get worse and you have many pain free years ahead of you,

Kindest regards, Maureen Leonard

Well here it is almost spring again. Hopefully we will be having nice warm sunshine before too long. I hope everyone’s winter has gone well so far.

For those of you who don’t have computers and online access, we posted a poll question on the TNAC website regarding the continued inclusion of recipes in the monthly newsletter. The consensus leans toward not having them in our newsletter any longer. If you wish to express your opinion regarding this and don’t have online capability, please get in touch with me via regular mail or telephone. As of now though, we will no longer publish recipes except for possibly on special occasions.

T

Have a wonderful spring everyone.

Patty

Hi Everyone,

We are just forwarding a request from a young man who is doing an article on rare disorders and the support/lack of support individuals are receiving.

Gibson Patterson is a journalism student at the Sheraton College in Oakville, Ontario. He believes that lack of government funding is a vital issue in the research and treatment of rare disorders. He would like to interview families/individuals and ask them the 9 questions that are below. He is hoping through these questions to pinpoint commonalities that respondents have in order to get a better picture of their experiences. Please respond directly to Gibson. His contact information is below.

1. Tell me how you got involved with the Canadian Organization of Rare Diseases? 

2. How did you go about getting treatment, what were the specific steps you followed?  

3. Were there strict guidelines to follow?

4. Since this is a rare disease was there a specific group to walk you through the support structure?  

5. For this disease were there options for funding offered by any government agency to assist with the cost of treatment  

6. Tell me about your experiences you encountered with the support structure for rare diseases?

7. Were there any shortfalls in the process and what did you do to correct them?

8. What would you tell other people about your experiences, what do you think people or families need to know if they were to find out they had a rare disease?

9. Overall do you think the support structure (i.e.) funding, support groups etc. are sufficient enough to actually help people with rare diseases?