The TNAC News

Dr. Anthony Kaufmann, Medical Advisor to the TNAC has agreed to answer your questions. If you have a question for Dr. Kaufmann, please send it to the newsletter at newsletter@tnac.org by e-mail, to Jan at (403) 295-0987 by phone or mail to TNAC Newsletter, #207 15 Everstone Dr. SW, Calgary, AB, T2Y 5B5

Dear Doctor,

My mother, 75 years old is suffering from teeth decay. She had a molar extraction 4 months ago, but is still experiencing pain. Her dentist told her that during the extraction of the molar, he thinks, he might have damaged the Trigeminal Nerve. Therefore, she has been taking antibiotics for 4 months, but it seems is not working because she is still in pain. Could you please tell me what is the proper treatment to stop her pain, in case the TN is damaged? Does she need a surgery?

Thank you for your reply.

Response from Dr. Kaufmann:

There are several possible causes of pain in this situation. If there is infection, then antibiotics are to be used and further dental assessment and work may be needed. If the nerve itself was damaged during the procedure, this may heal on its own in time, or remain a source of ongoing pain called trigeminal neuropathy pain. Lastly, the pain may be due to true trigeminal neuralgia (TN), that may have even been present prior to the dental work (did she have TN-like pain leading up to the dental work?). If the pain is diagnosed as true TN then there are a variety of medications that may be helpful, and TN specific surgical options if the medications prove unsatisfactory. The next step is to establish her diagnosis, and that may be done by her dentist and or neurologist.

Dear Doctor,

Does anesthesia dolorosa get worse over time or is what develops after surgery is what you are left with permanently?

Reply from Dr. Kaufmann

Anaesthesia dolorosa (AD) is one of the worst complications that may follow surgery for TN. AD is a severe, constant pain in an area that has lost all feeling due to nerve damage. It occurs in about 1 patient in every 100 who undergo rhizotomies of any type for TN. There are no cures, no established surgical treatments, and medications usually provide little help. The pain may develop immediately or gradually after the nerve damage. The longer it remains, the less likely it will ever go away.

AD is one of the possible "deafferentation complications" of the nerve damage procedures used for TN. These occur when the nerve injury procedure (eg. glycerol, radiofrequency balloon compression, radiosurgery, etc.) backfires. Instead of relieving the TN, the loss of sensation information coming to the brain through the affected nerve leads to a hyperactivity of the nerve control centre or nucleus. The result is new, constant, burning pain or possibly unpleasant or painful sensitivity of the face. Some degree of these new pain problems will occur in about 10% of those undergoing rhizotomies, with and only rarely results in full blown AD. Other deafferentation complications that may occur include loss of feeling to the cornea (that can endanger vision) or weakness of chewing muscles. As always, choosing any TN treatment deserves a careful and well informed consideration of all the options, include the specific pros and cons of each.

Support Group News

Calgary, Alberta

Next Calgary Support Group Meetings
October 26, 2005
November 23, 2005
Time: 1:30 pm
Calgary Co-Op Community Room
8818 MacLeod Trail South
Contact Jan at 295-0987 or email calgary@tnac.org

As an activity for the "Face-Off on Face Pain" week, Calgary will send out information to all medical, nursing and paramedical schools. We will also have a "video series" starting in that week where we will review educational videos.

A garage sale is planned for the spring – we need a garage so if anyone is willing to let us use your garage for our sale, please contact Jan.

Unfortunately our dinner out to show support to everyone with TN has been delayed.

Lethbridge, Alberta

Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on 2 pm Saturday, Oct 8, 2005 at the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge. Contact Marion Guzik at 403-327-7668. or Lethbridge@tnac.org

Toronto, Ontario

The Toronto Support Group will meet October 30, at 9:30 a.m. at the Thornhill Community Centre, 7755 Bayview Ave. Thornhill, Ontario. For more information, please contact Kathy Somers (905 853-9849), Sandra Arangio (905 284- 9215) or Dana Lavrence (905-886-7563) or email Toronto@tnac.org

We had our dinner on Sat. night and we had 43 people for dinner! Everyone enjoyed the evening. We had a 50/50 draw, with 2 door prizes. Sandra's daughter Mary and her fiancé Eric won the 50/50 draw. $85.00 and were kind enough to donate the winnings to our chapter. We are so very grateful to them for their kindness.

Mary Sandra and her family held a garage sale. Adrianna had a lemonade stand and made cookies to sell. Thanks to Michelle for her help, they raised $154.00.

T hanks to all of you who attended our first FACE-OFF ON FACE PAIN dinner. It was great to make contact and to see all of you. Every time we meet we learn something new.

We sent out letters and ribbons to medical clinics, doctors, chiropractors, and massage therapists. We ended up making blue and white ribbons to wear for the week.

We all gave our thanks to Dana and presented her with a plaque from the TNAC. Our group also presented her with a gift at the dinner for her kindness and friendship through some difficult days, also for starting the Toronto chapter.

We had our monthly meeting on Sunday am. Pauline arranged for her nephew Larry, president of Alfa Omega Dental Assoc, to come and talk to us about dentists and TN patients. He is going to arrange for us to have a forum in the new year. TN patients versus Dentists. This way perhaps we can help each other. So stay tuned for more information.

Larry was attending a dinner on Monday night with approx 300 other dentists and was kind enough to take our letters explaining TN and ribbons to give to them.

Two of our display boards on TN have been placed in the Toronto library system to educate others. I hope to place one in the Newmarket library on Tues. Thanks to my husband Dennis for his help making the display boards.

We talked at our meeting about setting up a support system for anyone who is on their own or elderly. Anyone who would like to be on a list to have someone from the Toronto chapter call every 2 months or so to see how you’re doing, or to let you know what were doing please contact me. kathleen_somers248@hotmail.com, or call 905-853-9849.

And that's about all. Have a great Face-off on face pain week. For those of us who are in daily pain, I pray tomorrow will be a better day.

Vancouver, BC

Vancouver & Lower Mainland Support Group

Saturday, November 26: 10.30 am - 1.30 pm

Speaker: Dr.Chris Honey, Neurosurgeon, Vancouver Hospital

Agenda:

10.30 - 11:00: Talk by Dr. Honey

11:00 - 11.30: Questions for Dr. Honey

11.30 - 1.30: Meeting: Social, Networking, Information Exchange

Contact or for further information: Ann Hopkins 604 732 1673 or email: annhopkins@shaw.ca

Marion’s Desk

The TNAC Annual General Meeting was held in Lethbridge on August 13, 2005. There were four members of the Board of Directors plus three members in attendance. Don Brewer, Sec/Treas., Marion Guzik, Pres, John Edwards, Patty Moyer – Board Members. Mona Leslie, a Board Member was unable to attend. We were delighted to have Gordon McCarver from Cornwall, PEI, Jan Williams, Calgary and Gwen Edwards, Lethbridge attend.

I am happy to announce that our Medical Cards should be ready for distribution in about 2 weeks. The final draft has been sent to Dr. Kaufmann for verification and upon receipt of same, will have them printed up. The original idea was for laminated cards, but unfortunately, we cannot have them laminated because of the information that is required on them.

Don Brewer, our Sec/Treas has resigned and Zennon Malec has been appointed Sec/Treas. in the interim. Thank you Don for your valued contribution to the TNAC. A Thank You plaque will be presented to Don at the October meeting.

Dana Lavrence has resigned as the Support Group Leader in Toronto, as she and husband Ben will be leaving for their new home in Florida at the end of September. We want to wish you Dana all the best and trust you will keep in touch with the TNAC. Kathy Somers, on behalf of the TNAC will present Dana with a Thank You plaque for her valued contribution to the TNAC. Kathy and Sandra Arangio, will be the new co-Support Group Leaders for Toronto.

My sincerest apologies to Dana Lavrence on the omission of her name in the September TNAC News, President's Report. It should have read Jan Williams, Dana Lavrence and myself attended the American Neurological Conference in Toronto in October. 2004, and had a complimentary table. This was our first experience and exposure of this kind and we gained a lot of knowledge. We have again been invited to their conference, but as it will be held in the US, find that we are not in the position as yet, to branch out that far.

Wishing you all a safe and pain free Thanksgiving.

Marion

Drug of the Month -

Prepared by Pat Rogers, Comox BC

Clonazepam

Classification: Tranquilizer in a family of drugs called benzodiazepines, also an anticonvulsant.

Uses: It is used to treat anxiety & panic disorders, restless leg syndrome, seizure disorders, neuralgias and can be useful in burning mouth syndrome. It has been used since approx. 1975 to treat TN with its anti-convulsant properties. It is one of the most sedating of medications used in facial pains. Often used in conjunction with other medications as an add-on therapy. Some studies found that it helped about 2/3's of people in pain reduction by slowing the activity of the nerves.

Warnings & Precautions: **Avoid abrupt withdrawal. Normally contraindicated for those with hypersensitivity to the drug, impaired liver or respiratory function and narrow or closed angle glaucoma. This medication can cause drowsiness & sedation which can affect the ability to drive or operate machinery. Care should be taken to assess how the medication affects these activities: particularly when first starting to take it. Seniors may have an increased risk of side effects, particularly with sedation and impaired coordination. Clonazepam can increase the risk of birth defects and should be avoided during pregnancy. This medication is not recommended for nursing mothers as it is excreted in breast milk.

Adverse Effects: Serious adverse effects include: a drop in white blood cells or blood platelets, breathing difficulties, slowed heart rate, and hypersensitivity to the drug. The most common side effects include: dizziness, unsteadiness, lightheadedness, drowsiness, and fatigue. Less common are: confusion, depression, impaired memory, blurred vision, dry mouth or an increased watering of the mouth, constipation, diarrhea, abdominal cramps, headache, slurred speech, euphoria, vivid dreams and changes in sexual desire or ability. Many side effects are dose related and decrease with continued use. Contact your doctor if side effects persist or are bothersome.

Withdrawal Symptoms: (from prolonged use of Clonazepam and other benzodiazepines). These medications should always be tapered gradually and under the supervision of your doctor to avoid severe withdrawal. Severe withdrawal symptoms include: seizures abdominal cramps, tremors, rapid pulse, delirium and psychosis. Other symptoms which can occur are: anxiety, restlessness, low B/P, headache, sleep disturbances, irritability, difficulty concentrating, sensitivity to noise & light, nausea/ vomiting, and increased perspiration. Symptoms present 2 to 6 days after the last dose taken and can last approx. 2 weeks.

Dosage: Dosages should be increase and decreased gradually. It is usually started at 0.5 mg. given 3 times a day (1.5 mg. /day). It is then increased by 0.5 to 1 mg. per day about every 3 days to reach the lowest effective dose. Average dose can range form 2 to 10 mg. per day in divided doses. The maximum dose is 20 mg. / day. Clonazepam is supplied in 0.5 mg. and 2 mg. tablets.

** For educational purposes only, for additional information on this or other medications please contact your doctor or pharmacist. Ensure to inform your doctor about all prescriptions, over-the-counter, herbal medications and supplements you are taking prior to taking any medication.

Grapefruit Juice and its affect on certain drugs

Studies have shown that grapefruit juice can affect the way your body absorbs and metabolizes certain drugs. Some medications need certain enzymes to break them down so that they can be eliminated from the body. Grapefruit juice interferes with one of these enzymes by inhibiting it in the intestinal wall. It can cause an unpredictable concentration of the medication you are taking in your bloodstream. This can lead to unwanted side effects or toxicity. As little as one 8 oz. glass of grapefruit juice can increase drug levels; with the effect lasting for 3 days or more.

Tegretol is one of the drugs which interacts with grapefruit. Findings show an increase in blood concentrations of the medication. Signs of toxicity include: increased drowsiness, dizziness, poor balance & coordination, nausea, vomiting, tremor and agitation.

Tangelos which are a hybrid of grapefruit may also interfere with medications. As well, sour oranges like Seville's may have a similar effect. Most other citrus fruits like tangerines, sweet oranges, lemons and limes have not been shown to interact.

The following is a partial list of medications that can interact with grapefruit:

Alprazolam (Xanax)

methylprednisolone (Corticone)

amiodarone (Cordarone)

Midazolam (Versed)

Atorvastatin (Lipitor)

Nicardipine (Cardene)

Buspirone (Buspar)

Nifedipine (Adalat, Procardia)

Carbamazepine (Tegretol)

Nimodipine (nomotop)

Cerivastatin (Baycol)

Nisoldipine (Sular)

Diazepam (Valuim)

Sertraline (Zoloft)

Diltiazem (Cardizem)

Sildenalil (Viagra)

Erythromycin (E-Mycin)

Simvastatin (Zocor)

Felodipine (Plendid)

Tacrolimus (Prograf)

Fexofenadine (Allegra)

Triazolam (Halcion)

Losartan (Cozaar)

Lovastatin (Mevacor)

Letters

I would like to know and see in the newsletter what goals the TNAC has for the year. What expectations does the president have for other chapters? What do the members expect and want to see from the TNAC.

….From Kathy Somers

Reply from Marion Guzik, President

GOALS:
1. The goals of the TNAC are to establish a Medical Advisory Board under the capable direction of Dr. Kaufmann, as he is looking into the possibility of organizing a National Trigeminal Neuralgia Symposium in conjunction with next June's Canadian Congress Neurological Sciences Meeting. This would serve a lot of proposes, including bringing the interested medical specialists together and then building an advisory board from that forum.
2. To appoint a nominating committee for the next election.
3. Will endeavour, if possible, to act upon whatever the members expect and want to see from the TNAC.
4. To try and finish the projects that the TNAC have started.

WHAT EXPECTATIONS DOES THE PRESIDENT HAVE FOR OTHER CHAPTERS?
The expectations when the TNAC was formed were to have many Support Groups in Canada. However, as you know, many requests have gone out to the members and also on the membership form for Support Group Leaders. We have tried our best to get as many groups going as possible, but it all takes time and money. Many of our members are in the older age group and cannot and perhaps do not want the responsibility of taking this on. Anyone that expresses interest in being a Support Group Leader is contacted immediately and new members are also approached so see if they would like to become a SGL, if there is not a Support Group in their area. Guidelines are available for Support Group Leaders.
A lack of funds was also instrumental in not getting as many groups as we would have liked. We are now in a better position to help our Leaders to a point, but a Support Group should be able to generate their own operating funds, as we in Lethbridge have done and were very lucky after a year of going place to place, to find a meeting place free of charge.

Lethbridge is the oldest Trigeminal Neuralgia Support Group in Canada, having being formed on June 14, 2000. Since incorporation on February 25th, 2003, we have added Toronto, Calgary, Lower Mainland, Vancouver, B.C., and hopefully Edmonton will soon join our ranks, as there is now some activity happening there. Ottawa and Saskatoon are still very much alive in trying to get a SGL in those areas, and hopefully something will happen in the PEI area. We do have Support in Quebec, Mindemoya, On., plus many Telephone Contact People in many parts of Canada.

********

Attention all Members – we would very much like to hear from you about your reaction to these goals and expectations. Please send your comments to newsletter@tnac.org or by mail to Jan Williams, #207, 15 Everstone Drive SW, Calgary, AB, T2Y 5B5 and we’ll include your comments and suggestions in the next newsletter.

Do you have recommendations for the President on the goals for the next year?

What comments do you have for the President?

How can the TNAC increase the number of Support Groups in Canada?

Do you think Support groups should generate their own operating funds?

Do you have any other suggestions for the organization?

********

Members’ News

NEW MEMBERS:

Jane Karlenzig – Calgary, AB

Diana LeFeuvre – Bowmanville, ON

DONATIONS:

Sylvia Van Dyke – Edmonton, AB

IN MEMORY OF HEATHER SCULLY:

John and Terry Scully, Ottawa, ON

Annual Meeting Report

TNAC 2005 Annual General Meeting

Saturday, August 13, 2005, 2:00 p.m.

Lethbridge Seniors’ Centre

Lethbridge, Alberta

Members in Attendance:

Gordon McCarville

John Edwards

Gwen Edwards

Jan Williams

Patty Moyer

Marion Guzik

Don Brewer

Marion read the President’s Report. Her report was adopted as read.
Marion discussed the illegalities of a motion and a second that were put forth in the newsletter.
Don read the Treasurer’s Report which was adopted as read.
Don recruited Patty and Jan to review the Annual Balance Sheet and sign that they had done so.
Funding from the Development Bank was brought up again. No one has had time to further look into this. It is going to take some time to develop a proposal which must include a budget of how the money is to be spent, among other things. We were informed that equipment such as computers, copiers, etc., may be hard to get with this type of funding. It was suggested that it might be easier to have this equipment donated.
Jan volunteered to review the funding proposal when it is put together.
The Medical Advisory Board was discussed. So far, we are unaware of anything Dr. Kaufmann has done in this regard. Dr. Kaufmann had mentioned to Marion that he would like to see some nominations. Jan said she can make some guidelines regarding the Medical Advisory Board available and will send them to Marion.
We discussed adding to the Board of Directors drawing from members from elsewhere in the country. A Nominating Committee should be set up to find new board members.
Don informed the members at the meeting that he would like to resign from the Board as Secretary-Treasurer and asked how he can do this as no nominees are available, even if we could hold an election. It was decided that the Board would appoint a replacement.
Patty said she would work on a Nominating Committee.
Jan discussed how well the T.N.A.C. web site was doing.

It has been receiving a very good number of hits.

Jan also brought some printouts of a monthly history showing types of visits, pages,
Hits, band widths, and countries of origin
Things look very promising regarding the web site.

Meeting was adjourned at 3:30 p.m. Don Brewer, Sec/Treas.

TN Story

Here is my story:
13 years ago after trying a number of dental procedures to relieve my pain I was finally diagnosed with TN. No matter which doctor I went to, the answer I kept getting was "If the medication works stay on it". That is what I did. I lived on Tegretol with all of its numbing side effects for as long as I could. When I was up to 1200mg I finally had enough. I had gone to a lecture here in Toronto given by Dr. Anthony Kauffman and Dr. Michael Tymianski. After much sole searching I finally opted for the MVD. With Dr. Tymianski.

When I first woke up after the surgery I was in much pain from the actual surgery but I was not dizzy or nauseous. I was numb on the bottom left of my face (and still am). The areas where they screwed the halo onto my head hurt too. The day after my surgery I had a TN twinge and I was so discouraged and scared. I refused to cut my meds in half as the doctor ordered. I went from 1200mg to 800mg and I stayed there for 1 week. I continued to have twinges and sensations that never actually turned into twinges. I decided I had to cut down on the meds some more or what was the point of doing this surgery. I had to have faith in what the neurosurgeon did. I cut down to 600mg for 1 week and then 300mg for 1 week and then off all meds. I

t has been about 2 weeks now that I have been medication free. I still have the odd twinge now and again but they are few and far between. The surgery was a success. The anticipation of an attack has not gone away though. I am now free of my pill timer and the panic I felt every time I was late with a dose. I can’t believe I didn’t do this earlier. My next big step will be to get on an airplane. That is where I had some of my worse attacks. I haven’t flown in 13 years. Can’t wait!

Ella Burakowski
Toronto, Ontario

Patty’s Ponderings and Miscellaneous Ramblings

Wow, it’s already autumn and I’m not even close to being prepared for any cold weather. For any of you who live on an acreage or farm you know all about all the ‘things’ that need doing before the snow and freezing cold comes. The reservoir pond needs filling; automatic waterers need cleaning out, corral needs cleaning & irrigation pipes need blowing out and carried by hand to store in the Quonset for the winter. Then there are fences to be checked, hay to be stacked, lawn (over an acre!) to be mowed for the last time & flower beds to be taken care of. The septic tank needs to be cleaned and all the broken branches laying around picked up and burned along with the rest of any garbage found in the yard, ditch & field. One last trip to the local dump for whatever you can’t burn and check the tractor’s snow blade so that we can get out of our yard after a big snow. Then there is still stuff that all of us need to do such as putting on storm windows and/or putting up that plastic window protector on the inside that you use a blow dryer with. And making sure the furnace is working properly and cleaning your eves trough and washing windows and digging out shovels and putting away rakes, etc, etc. You know what – I’m tired out just talking about it all!

I get laid off from my summer job at the end of October and I want all the ‘stuff’ done before that so I can relax and work on my hobbies for a couple months. At least, this is the plan. The only problem is that this ‘plan’ never seems to work out the way I want. I wonder, does this happen to everyone else too? I make a list of things to do before I get laid off and then I make a list of things I want to accomplish during my 4 months of ‘off time’. Every year I do this. And, every year it seems as if something always puts an end to my well thought out plan! I’ve tried to follow my plan. Maybe this year, after all the pre-winter chores are done, I’m just going to say the heck with a plan or list. I think I’ll just ‘wing it’ this winter – whatever happens, happens. Yeh, I think that will be my plan for this year.

Well, now that I’ve made my plan not to make a plan and list, I hope you all have a wonderful autumn. And thanks everybody for listening to the total ramblings of a middle-aged mind.

Patty

HAPPY BIRTHDAY AND HAPPY ANNIVERSARY

TO THOSE WITH October CELEBRATIONS

AND A HAPPY THANKSGIVING TO YOU ALL