Volume 5, Issue 4

April 1, 2005 

The cause of FMS is not known. However, changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.

There is no specific treatment for Fibromyalgia. Usually patients are prescribed drugs to help with sleep, and analgesics for pain relief. In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

First marketed in 1983, gabapentin (Neurontin) has been one of Pfizer's top performing drugs. Lyrica (Pregabalin) is seen as an important successor now that gabapentin is facing the threat of generic competition. Both drugs share a similar mechanism of action. Because it is more potent than gabapentin, Lyrica (Pregabalin) achieves efficacy at lower doses. This should lead to fewer dose-related side effects. Clinical studies with Lyrica (Pregabalin) have been carried out on over 10,000 patients worldwide.

Indications

Pregabalin has been developed for treatment of:

• Epilepsy

• Neuropathic pain

  • Pain arising from trapped or compressed nerves

  • Drug induced nerve damage

  • Diabetic neuropathy

  • Post-herpetic pain

  • Phantom limb syndrome following limb amputation

  • Peripheral neuropathy

• Fibromyalgia

• Anxiety disorders

While there have not yet been published studies for the use of Pregabalin in Trigeminal Neuralgia, there have been reports of good success in Post-herpetic Neuralgia and Fibromyalgia with doses of 300 mg to 450 mg per day.

Patients report only mild to moderate side effects such as dizziness, dry mouth, swelling of hands and feet and weight gain.

This drug is not yet approved for use in Canada but it is anticipated it may become available as soon as the fall of 2005.

My apologies to those of you that emailed me this past month and never got an immediate reply. I am having a bout of TN and you all know what I am talking about. I am hoping this session will soon be over, but until then --- please be patient with me.

I would like to remind our Members when you mail in your Membership Fees, please let me know if you would like a "Laminated Emergency Card". So many of you have not responded to this request, and in order for us to get a good price on the cards, I have to know. All of you who have sent in your Fees, and did not respond, please let me know otherwise, you will not receive one and that would be too bad.

Hoping to have more news for you next month

Marion

Monthly meetings are held on the third Tuesday of each month at 7 p.m. The next meeting will be on April 19, 2005 at Confederation Park Senior Centre; 2212 13^th St. NW. Contact Jan at 403-295-0987 or jan.williams@shaw.ca .

We hope to have a guest speaker at this meeting – Dr. Joseph Alpine, Chiropractor.

The Lethbridge Support Group meetings are held the second Saturday of each month. The next meeting will be on Saturday, April 9, 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, 2005, 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 Time: 1:30 - 4 p.m. 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

One of our members in Toronto suggests that everyone with TN – especially those on drugs – should consider having a Medical Alert Bracelet. The contact information for the Medical Alert Foundation of Canada is.

National Office Canadian MedicAlert® Foundation
2005 Sheppard Avenue East, Suite 800
Toronto, Ontario M2J 5B4
416-696-0267

Call toll-free: 1-800-668-1507
Fax: 1-800-392-8422

http://www.medicalert.ca/en/index.asp

Nora and Norman Kudrenecky – Kitchner, On

Robert Dunlop – Ottawa, ON

Constance Allen-Miramichi, NB

Lois Henry – Winnipeg, Man.

Margaret Nikiforuk – Toronto, On

Mary Merrill – Ottawa, On

Marga Joost – Alexandria, On

Rev. Frank Stone – Nepean, On

Vera Cail - Camrose, AB

Cora Rafuse - North Battleford, Sask.

Patricia Lloyd – Pincher Creek, AB

Donald Conn – Vancouver, BC

Regarding recipes and frequency of the newsletters:

Patty: 

It is a bit late to send you my comments on the newsletter but perhaps better late than never.  I think you are doing a fantastic job.  I edited a newsletter for the past two years for an organization to which I have belonged for a long time.  It was not nearly as complicated as TNAC's--- everyone sent their submissions and I just put it all together.  But it was still a lot of work.   I enjoy reading the TNAC newsletter and getting it by email.  It saves paper and postage for the organization.  As for the recipes....I have never used them so perhaps the general opinion is that they are not worth it.  I love the notes from Marian's Desk and your wise thoughts...Keep up the good work.  Nora K.  - Kitchener

A monthly newsletter keeps things current: updates on drugs, personal stories, information to help deal with the pain and psychology of TN e.g. the meditation information in this month's newsletter, and never to forget Patty's Ponderings and Miscellaneous Ramblings through an Interesting Mind.

Thank you for the excellent newsletter.

Oh! I'm not wild about recipes in a TN newsletter, but again, that is a subjective thing isn't it? There is plenty of opinion on it either way.

Ray H. – Vancouver

Hi Patty

Monthly is good. As long as there is something to talk about, of course. If there isn't, you can always get someone like me to contribute a nonsense vignette to try for the entertainment factor. Humour is subjective though, isn't it?

I enjoy the newsletter very much. I appreciate the tremendous amount of work that goes into the newsletter, even though I read it all every month, quarterly would be alright. The personal stories are of great interest and the drug of the month is very informative.

We do not have a support group in Manitoba so the newsletter keeps me up to date on many issues relating to TNAC.

Keep up the work!

Audrey H

Since my last M.V.D. in December of 2002, I have been doing fairly well. I remained pain free and drug free until September of 2004. Then the pain started coming back. The pain was not as severe as it had been in the past, but it became enough that I started taking Tegretol again. As in the past, I was having to increase the dosage fairly quickly, so I supplemented with Baclofen. This regimen seems to be working for me. So far I have been keeping the dosage of Tegretol fairly low, and the pain is well-managed, leaving me in pretty good health and spirits. I try to remain positive and continue on as normal. Here's hoping everyone else is doing as well or better.

Don Brewer

I was diagnosed with atypical facial neuralgia approx 4 1/2 years ago.  My problems began with my sinuses.  I developed allergies/asthma when I was 26 years old.  I also have a disease called rhinitis (which may have caused the allergies or vice versa.  Rhinitis often accompanies asthma and sensitivity to all anti-inflammatory medications and is a progressive disease that causes polyps to grow in the sinus cavities.  My sinus problem required several surgeries to remove the polyps and after the 2nd surgery I became prone to sinus infections that couldn't be cleared through antibiotics and seemed to be causing excruciating, knife-like pain on both cheeks.  Nothing seemed to help the absolutely excruciating pain except for strong pain killers.  At first my doctor thought I was addicted to the pain killers and cut me off.  After three days, I was totally incapacitated by the pain and the doctor had to admit that the pain did not follow the guidelines of an addiction.  He started to suspect facial neuralgia and tried me on all the epilepsy drugs (Neurontin, gabapentin) which I showed a strong reaction against. 

Eventually I saw a neurologist who confirmed I had some sort of facial neuralgia. Since I could not tolerate any of the drugs like Gabapentin, I was put on hydrocontin (a narcotic) 18mg 3-5times a day. The neurologist felt that the underlying problem was still sinus related and sent me to another nose specialist. A CAT scan failed to show any solution and I was out of options and becoming desperate.  At that time, spring 2002, I started looking on the internet for other options and I found the website for the TN group and emailed them who put me in contact with Marion Guzik. She phoned me and actually set me up with an appointment with a Calgary neurosurgeon. He decided to cut the nerves in my cheeks rather than try anything else.  It was scary to try something so drastic with no guarantee it would even help but I was desperate.  After the surgery in September, 2002, the pain changed from the searing knife-like pain to a hot-cold pins and needle feeling.  While this was uncomfortable, it was NOTHING like I had experienced before and my pain killers dropped from 90mg a day to 60 almost immediately.  Gradually the pins and needle feeling has subsided and I am now down to 18 mg a day. 

I am so very grateful to the TN group for caring enough to talk to a doctor about my problem. It is an invaluable resource that I have told many others about.  Surprisingly, since I was diagnosed, I have met 2 others in my community with TN (although theirs followed the typical diagnosis and is responding to treatment).

 Thank you again,

Hello all, I hope everyone had a wonderful Easter. I want to thank all those who have emailed me with their comments about the newsletter frequency and recipe section. You will notice that most of the comments are published in this issue of the newsletter.

I would like to remind everybody to let Marion know if you would like a laminated medical card. She needs to know ASAP so these cards can be ordered. Please contact her and let her know.

I’m back to work once again at my seasonal job in the landscaping supply business and things have been extremely hectic for me there. Our weather has been quite mild for the most part so far this spring so there are lots of people who are already searching for their landscaping products for this season. Oh well, it keeps me out of mischief I suppose.

I’ll leave you with a good little quote I found recently. Hope everyone has a great April. If you have any more comments on the newsletter, please feel free to email me.

Patty

The secret of happiness is not in doing what one likes, but in liking what one does.
--James M. Barrie