Inside This Issue

Inside This Issue

Drug of the Month

Dr. Kennedy and Botox

Volume 6, Issue 4

Summer, 2006

Your financial help is needed to support the TNAC and the local support groups. Donations can be made by check or money order to: TNAC, 1514 Lakemount Blvd. South, Lethbridge, AB T1K 3K4 Be sure to indicate on your check or MO if you want to donate to a specific support group.

Newsletter Team

newsletter@tnac.org

Editor:

Patty (403) 345-6262

DRUG OF THE MONTH

Lamictal--(lamotrigine)

Classification: Anti-convulsant

Uses: Lamictal is used alone or in combination, as an add-on drug to treat seizure disorders. It has also been used as a mood stabilizer in the treatment of bipolar disorder. For T.N. it seems to work better when used with other medications than on it's own to combat pain. Lamictal has also been prescribed for post-herpatic neuralgia and some diabetic neuropathies. It appears to work by blocking sodium passage in the nerves and slowing the release of glutomate. Glutamate is an amino acid which is important in transmitting pain signals.

Warnings & Precautions: Severe rashes have been reported by people using this medication. Seek medical attention immediately if you notice a skin rash/ blistering, fever, swollen glands or flu-like symptoms. Severe rashes may be associated with a rare though serious condition called Stevens-Johnson Syndrome. In most cases a rash associated with taking Lamictal occurs within 2 to 8 weeks of starting treatment. People with reduced liver or kidney function may be more sensitive and a lower dosage may be required. This is also true in the older population as medications are removed slower from the body. When initially on lamotrigine it is advised to see how your body is affected by the medication in regards to dizziness, coordination and drowsiness prior to driving or performing rotationally dangerous tasks. In general, it is advised to avoid stopping anti-convulsants suddenly. Lamictal should be stopped gradually under the direction of your doctor. If planning to start or stop using birth control pills or hormone replacement therapy, it is important to discuss this first with your doctor. It is recommended that this medication not be used during pregnancy, unless the benefits outweigh risks. Lamotrigine has been shown to pass into breast milk.

Adverse Effects: The most common side effects include: drowsiness, dizziness, problems with muscle coordination, blurred or double vision, insomnia, headache and gastric problems such as heartburn, nausea or diarrhea. Consult with your doctor if these side effects are bothersome or severe, they may be temporary as your body adjusts to the medication or dosage change. Check with your doctor as soon as possible if you experience: mood or mental changes, (confusion, anxiety or irritability),

dark colored urine, rash, flu-like symptoms, unsteadiness, uncontrolled eye movements, or sores/ ulcers in the mouth. Immediately check with your doctor if you experience signs of an allergic reaction, swelling of hands & feet accompanied by shortness of breath, unusual muscle cramps/ pain, signs of bleeding or chest pain. This is not a complete list of possible side effects and some people may experience an adverse effect other that the one's listed. Contact your doctor if you have any symptoms that worry you.

Dosage: In Canada, Lamictal comes in 25mg. 100mg. and 150mg. tablets. As well, it is available in low dose chewable tablets. The usual starting dose is 50mg. per day for 2 weeks (when it is used as an add-on medication). It is then increased by 50mg. / day in 2 week intervals. The usual daily dose ranges from 300--500mg. in divided doses. A different dosing schedule may be prescribed depending upon the condition the drug is being prescribed for, age & medical conditions of the patient and other medications the person may be taking. Lamictal can be taken with or without food.

*** 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.

Dr. Ross Kennedy and Botox

Notes by Ann Hopkins, Volunteer Coordinator, Vancouver and the Lower Mainland (Any errors or omissions are mine)

Dr. Ross Kennedy generously gave up his Saturday morning to come and talk to the Vancouver and Lower Mainland TN Group about Botox and its possible application to TN. Although there is not a lot of experience with it, it has proved to be of benefit to a small number.

Pain and How it Works

Pain is experienced two ways:

1) Peripherally via the skin: Peripheral sensors in the skin are connected to the spinal column and pain signals are transmitted to the brain electrochemically.

2) Centrally in the brain. Drugs work either by releasing or blocking the uptake of information. Pain relief for pain that is perceived via the skin (peripherally) can be treated with drugs like aspirin that work on the peripheral receptors. Drugs like Aspirin, Motrin, Advil, Tylenol, Celebrex and Vioxx address this kind of pain.

Drugs that work directly on the brain – or centrally acting agents – includes narcotics and opiates like Morphine which binds to the body’s own morphine receptors.

Post-operative pain relief is usually a combination of peripheral and central nervous system drugs.

Neurological drugs are designed to interfere with the transmission of information via neurotransmitters – the information carriers – like serotonin, dopamine and nor adrenaline. Drugs that affect the neurotransmitters also affect consciousness.

Thirty per cent of people will experience the placebo effect. In other words, when people are told they are receiving morphine but are being given a placebo, a third will experience relief of symptoms.

What is Botox?

Botox was being used medically for facial tics and to rectify “crooked” eyes. The side effect of vanishing wrinkles was noticed and a multi billion dollar cosmetic industry was born.

Botox is an abbreviation for Clostridium Botulinum A -- a neurotoxin. It’s toxic to the central nervous system and was developed by the US government as a biological warfare agent. It is used in tiny doses as a therapeutic agent and is FDA approved for twitches, tics and migraines as well as for overactive sweat glands.

Botox does not enter the body’s system or get absorbed into the body. It remains in the location of the injection site and acts by weakening and relaxing the muscle. Other than this, there are no known side effects to Botox nor does Botox interfere with other medications. Best known for its cosmetic uses, Botox has been used safely for over 20 years but problems have been experienced from using “bootleg Botox.”

When a muscle is injected with Botox where the transmitter is acetylcholine, Botox very selectively knocks out the transmission from the nerve ending. The injection takes effect slowly, over five days and lasts five or six months

Dr. Kennedy has used Botox for hemi facial spasm and twitches and, when treating patients who also had Trigeminal Neuralgia, patients noticed that their TN also appeared to clear up. But the sample size is small: three patients.

There are two medical studies of Botox and TN: one a study of eight, the other 13. Again, the numbers are not sufficiently large to be conclusive and both studies used different methods which makes comparison difficult. So while this avenue of treatment does appear to hold promise for the future, there is no definitive information about Botox’s effect on TN.

Health Canada pays only for approved uses like twitches. Different insurance companies have different policies; for example, Blue Cross will often pay for Botox for migraines even though this is an “off label” use whereas Pharmacare will not. Trigeminal Neuralgia is not covered, but if you happen to have a tic or twitch in the same place as TN, the twitch is covered.

Botox costs around $11 to $22 a unit – 50 units is around $1000. If Botox is being used for medical reasons, the physician’s fee is covered, but Botox is not.

As Dr. Kennedy pointed out TN is an “orphan disease.” Not enough people have TN to make it sufficiently profitable for the drug companies to exploit and, as a small group with an incomprehensible and relatively unknown or misunderstood pain problem we lack political clout.

To sum up, this is a potentially interesting avenue of enquiry especially for “hard cases” who’ve run out of drugs and surgeries. Cost is a factor and for those who can afford it, it may hold out hope of a new way of striking back at TN, although those of us whose TN is triggered by touch may not want to risk an injection.

If anyone does feel called to try Botox, we’d be very interested in getting your input and feedback.

Lastly, you are likely to need a referral from your family physician to see a Dr. who specializes in the medical uses of Botox.

Please send your letters via email to newsletter@tnac.org or mail to Patty, TNAC editor, Box 973, Coaldale, AB, T1M 1M8

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, or snail mail to Patty at Box 973, Coaldale, AB, T1M 1M8.

Could you please tell me if any patients with TN have facial swelling? I have facial swelling along with facial pain on the right side of my face. I would appreciate hearing from you.

Facial swelling is not a feature of Trigeminal Neuralgia. An individual with face pain that is accompanied by swelling of the face probably has another condition and the standard TN treatment options are not likely to be helpful. An exception to this may be the occasional patient with “Atypical Trigeminal Neuralgia” who has a major complaint of the brief sharp attack of TN, in addition to some lesser degree of constant, aching pain in the same area. This “atypical component” of their TN pain may make the face feel swollen, although I have never seen anyone with typical or atypical trigeminal neuralgia who actually have visible swelling of the face.

I have just had a most severe month with TN & am desperately looking for advice as to what steps I should be taking should it return. Approx. 30 years ago I was diagnosed with myasthenia gravis.

In August of 2003 while on a boating holiday I got this terrific pain in my cheek - just like a lightning bolt going thru my cheek.

After weeks of pain on & off but never lasting too long (3min.) I finally saw a neurologist who immediately arranged an MRI after putting me on

Tegretol to kill the pain. In Dec. the MRI showed no sign of MS & the neurologist indicated I have never had myasthenia gravis & I do not have MS.

Nov. 2004 I got quite ill & was in bed for 2 weeks - finally discovered my liver could not handle the Tegretol. Went off that, I started on the Neurontin. All summer was fine & in Sept. 2005 it struck again - pain more sever than ever, increased the meds to 8 per day. Had a great winter & on Apr. 4th 2006 it returned - this time in my eye area. It felt like an electric shock going right thru my eyeball. At this point I had reduced my meds to 5 per day since I was having such a great winter. Gradually got back to the 8 per day

Neurologist added (Keppra) Levetiracetam @ 500 mg. (2 per day). Spent - mainly in bed with brutal sharp pain when trying to walk, talk, drink or eat. Very tired & felling like I'm in a daze - do not want to go out & living in fear of the pain striking at any moment.

After being on the 10 pills per day for almost 2 weeks I am now almost pain free. However, when it is close to the time to take meds I am well aware that the pain is still waiting to strike. Just little jabs every now & then. Could you suggest my next step should this blast of lightning return?

By the way I am 61 years of age & retired 3 years ago & was expecting a much higher quality of life.

If we disregard the “Myasthenia Gravis” part of the story, this lady sounds like a sufferer of typical TN. Medications are working (partially) with side effects. Surgical treatments should be considered and fully explored, not only to manage the current TN problem, but also with the aim of preventing any future attacks that will undoubtedly become more frequent and severe with treatment.

Regarding the type of surgery, all options should be thoroughly reviewed. My bias is towards MVD, especially considering the upper face involvement.

Regarding the prior neurological problems, these likely are not related to the TN, especially as the MRI is normal.

Great news has been received from Toronto that within the next few months a Cranial Nerve Disorders Clinic will be opening at the Toronto Western Hospital. The neurosurgeons associated with this clinic are Dr. Tymianski and Dr. Hodaie. The clinic is scheduled to open in September and will operate l day a month for Trigeminal Neuralgia Patients. I do think this service will have to be extended, as everyday I am receiving calls and emails from people wanting to know about the TNAC, and when they realize help and contacts are available to them they are so grateful.

This news is excellent, as right now, it is very hard sometimes for our members to see a neurologist or neurosurgeon, to get a proper diagnosis.

I will keep you informed about the clinic and it will be advertised in our Newsletter when everything is completed

The TNA has a new book out entitled “INSIGHTS”, Facts and Stories Behind Trigeminal Neuralgia, Understanding and Treating What Is Often Called The World’s Worst Pain.

This book was written by Dr. Joanne. M. Zakrzewska, Professor of Pain in relation to Oral Medicine and an Honorary Consultant at the Institute of Dentistry, Barts and the London, Queen Mary’s School of Medicine and Dentistry, University of London, England. She is a member of the US TNA Medical Advisory Board and co-founder of the UK TNA and Chairman of its Medical Advisory Board.

This book is being offered to us for a limited time only (July 31) for $22.00 US. Should you decide to purchase this book, I will let you know what the exact cost will be in Canadian Dollars, when I have more details. Please write, phone, or email me at: TNAC, 1514 Lakemount Blvd. S. Lethbridge, AB

The new Striking Back Books are still available. The cost is $ 40.00 which includes shipping.

Hope you are all enjoying your summer and above all – “Pain Free”, and hope to see you at our General Meeting in August.

Lethbridge, Alberta

The next meeting will be on August 12, 2006 at 2 pm in the Lethbridge Senior Centre, 500 – 11^th Street, South, Lethbridge.

This is also our annual General Meeting and elections. The meeting is open to all members.

We will not meet again until after the summer. Our next meeting is scheduled for September 30th. At that meeting we plan to have a guest speaker - Dr. Melonie Jensen, an Acupuncturist and Doctor of Chinese Medicine. She has a web site you can look at: www.terrasana.ca.

I plan to attend the TNA's national Conference in Portland in September. The group offered suggestions of topics which hold special interest and I will try to gather information on those topics and bring them back to the group. If anyone has suggestions to add to the list, please contact me:
Our list:

Group Finances: Thank you to the people who generously donated money to the Calgary TN Group. This month we have raised a total of $381.80 - Our garage sale raised $241.80 and we received the rest in donations. Our only expense for the month was the ad in the newspaper for the garage sale. Our balance is a healthy $680.30.

Calgary TN Group Library: We have the beginnings of a very nice library of resources that can be borrowed by any Calgary group member. Please contact Jan:

There is a new book published by the Trigeminal Neuralgia Association in the USA. It is “INSIGHTS: Facts and Stories behind Trigeminal Neuralgia” written by Dr. Zakrzewska. This is an excellent book which focuses on the patient and what it is like to have this disease. Dr. Zak sought input from patients across the US and Brittan who described their facial pain experience and their search for help in stories and poems. The book offers practical tips on coping with the pain and explains clearly the different options for treatment and what each has to offer. I especially appreciated the list of references at the end of each chapter. I also found her descriptions and explanations of medical studies to be really helpful when you are trying to sort out the conflicting information on the internet. She outlines what makes a good study and how to identify those that are not.

The book is available from the TNA for $27.95 USD www.tna-support.org or from Barns and Noble (an on-line book store) for $20.12 USD www.barnsandnoble.com (Search for Trigeminal Neuralgia on their site)

For those of you in the Calgary group I will have a few extra copies for sale – I think the price will be around $25 Canadian – that price will be confirmed once the book arrives from the States.

4255 Laurel St. Vancouver (Laurel at West 26th - one block East of Oak) Informal meeting to exchange new and views and watch DVDs of specialists and presenters at the US TN Conference

For further information please contact: Ann Hopkins, Volunteer annhopkins@shaw.ca

Toronto chapter meetings: Thornhill Community Centre, 7755 Bayview Ave. Thornhill 9:30 am.

We meet the last Sunday of the month. All are welcome. Please bring a family member or friend for support. Kathy and Sandra look forward to meeting you.

If you would like to attend one of the Toronto meetings and would like to see it held in a different location please contact me at toronto@tnac.org

At our last meeting in March several people commented that they might like to have a dinner in a different location from the Markham area. If you have suggestions for a location change also contact me at toronto@tnac.org

On June 5th our 30th wedding anniversary my husband Dennis and i set off on a cruise to Alaska. We had an amazing time. My favorite scarf joined me. Flying and amazing adventures, like flying on a helicopter and landing on two different glaciers, a four seater plane around McKinley mountain, and flying on a float plain and river cruise (inside seating for me) around the misty fiords in Ketchican didn't bother my TN any more than usual. I would do it again in a flash. I just have to win the lottery.

I read an article in the Lethbridge Senior Citizen, about knitting and crocheting “Izzy African Comfort Dolls”, which are sent to orphaned children and children with HIV/AIDS. I contacted William Willbond of Saanichton, B.C., a representative of ICROSS, a Non-profit organization, and was told the dolls bring smiles of joy to the little faces of suffering children all across the African Continent. These children have never had a toy and when they die of their disease, their doll is buried with them.

The doll knitting program was started by Mrs. Carol Isfeld, who knit the dolls for her son to hand out to the children of war on the various missions he served on. Her son Mark was killed in the former Yugoslavia by land mines and she continued to knit and the peacekeeping soldiers continued to hand out the dolls. She gave ICROSS CANADA permission to change the faces of the dolls to black and brown for the “Izzy African Comfort Dolls”. To date more than 20,000 dolls have been sent to the 3rd world, however, there are millions of Aids Orphans, and so they are a few short.

The Ontario Director of ICROSS CANADA, Mike Comeau, can refer our knitters in Ontario to Deborah Collins at Health Partners International of Canada (HPIC) in Toronto, who packs physicians travel packs with the dolls.

Thank you for caring and bless you for sharing with the suffering poor in the global village on our battered and bleeding wee planet.

Knitting and crocheting are great stress relievers and I am inviting all TN members to participate in helping these wonderful Peacekeeping Soldiers to be able to reach into their pockets and hand out these dolls to every child they see.

For our Western Members you may send them to: William Willbond, Box 3, 1883 Prosser Road, Saanichton, B.C. V8M 2C3.

For our Eastern Members, please refer to the Ontario Director of ICROSS CANADA, Mike Comeau.- see above.

I have seen 300 of these dolls made up and they are truly amazing. I have enclosed the patterns and picture for you to see. Some were small and some were a bit larger. Have fun, and use your imagination.

Black, red, white plus at least three other colors of easy care yarn, whatever weight fits gauge

With black yarn, chain (ch) 37. Last 2 ch are first stitch (st) in first row. Slip stitch in first st of same row, ch 1 and start next row in a round.

Row 1: Continuing with black, sc in second st from hook and in each of remaining ch (should be 35). Ch 1 and slip stitch in first st of same row, ch 1 and start next row in a round.

Rows 2-3: Continuing with black, sc in each st across. Finish off black. This is the “shoes”.

Rows 4 – 14: *With colour A, sc in each st across. Slip stitch in the first st of same row, ch 1 and start next row in a round. Continue from * until you have 10 rows of Colour A. Finish off Color A. These are the “pants”.

Rows 15 – 25: **With Colour B., sc in each st across. Slip stitch in first st of same row, ch 1 and start next row in a round. Continue from ** until you have 10 rows of Colour B. Finish off Colour B. This is the “shirt.”

Rows 26 – 34: ***With black yarn, sc in each st across. Slip stitch in first st of same row, ch1 and start next row in a round. Continue from *** until you have 8 rows of black. Finish off black. This is the “head”.

Rows 35-42:****With Colour C, sc in each st across. Slip stitch in first st of same row, ch1 and start next row in a round. Continue from **** until you have 8 rows of Colour C. Finish off Colour C. This is the “hat”.

Flatten cylinder lengthwise and slip stitch bottom (original chain) with black yarn to make an “envelope”. Weave in ends.

Stuff lightly with stuffing. Enough stuffing to pad but not stretch the stitches.

At top of “hat” sew same colour yarn as the top row through all sc and pull tight to make a point.

Do the same, with either colour, between Colour B and the first row of the “head”. Pull tight enough to delineate the “neck”.

About 5 rows down from the neck and 3 to 5 sc in from sides on both sides, sew with Colour B down in a straight line to bottom of “shirt” to simulate arms.

About 3-4 rows down from the top of Colour A sew with same colour yarn down to bottom of “pants” to delineate “legs.” Do the same with black of the “shoes.”

Note: You can have some fun with this. Make the “shirt” and/or “hat” striped. Add a pompom to the top of the hat. You can use brown for the “head”.

The basic method for making each doll is the same. Begin at the feet and knit a rectangle, changing yarn color for each body segment. The head is stuffed and the neck formed by pulling in with a gathered thread. When the body is stuffed, the feet are formed by pulling with a thread. The arms and legs are defined by stitching through all layers after the doll is stuffed. The number of rows in each part of the doll can be increased or decreased depending on the individual design. Finished height of each doll is approximately 13 cm (5 inches).

Small quantities of Sayelle or similar weight yarn, 1 pr. 2.25 mm needles, tapestry needle, polyester fibre fill.

Row 11: (K1, K2 tog.) 9 times. Draw yarn through remaining stitches and pull up.

2. Stuff head. Weave a single strand of matching yarn across first face row. Draw up to form neck and secure ends.

5. With matching yarn, form arms with tiny back stitches through all layers from waist to 2 rows beneath the neck. Define legs in the same way, from bottom to just below waistline.

Please log on to www.ctv.ca/generic/generated/news/WFive.html for a heart warming story. Scroll down and click on "Heart of Darkness"

I’ve been a bit under the weather lately so I haven’t much to chat about this edition. If I’ve left out anyone’s submission, please email me once again so I can insert it into the next edition.

I hope everyone has sent in their Election Nomination forms. The Election is coming up fast and we need the names as soon as possible. The forms were included in a previous issue of the TN News and you may snail mail them to:

Please send me your comments, questions, stories, etc. You may either snail mail to: Editor, TN News, P.O. Box 973, Coaldale, AB, T1M 1M8 or email to editor@tnac.org. Thanks everyone.