We are pleased to introduce a new alliance of Trigeminal Neuralgia Support groups in Canada, CanadaTNA.  (CaTNA)  This association has been established by the TN Support Groups in Toronto and Calgary and our main focus is to provide a network of support and information to groups and individuals with TN and facial pain across Canada.  The CaTNA will work closely with the TNA in the USA and hopes to work closely with the TNAC.  

 

Our goal is to strengthen the local support groups. If there is no group in your area please contact us and we will help you establish a group in your community.   Remember – you are not alone!  There are others who understand your pain.  We want to help you find each other.

 

We intend to produce a regular newsletter with information on TN and facial pain.  As members of CanadaTNA you will automatically become members of the TNA (Trigeminal Neuralgia Association) in the USA and will be eligible to receive their TNAlert.  Those people who are members of the TNAC will continue to receive their newsletters as well. 

 

Canada TNA

Western Office:      c/o Jan Williams,  #207, 15 Everstone Dr. SW, Calgary, AB, T2Y 5B5

                                Phone: (403) 295-0987                                           email: calgarytn@shaw.ca

Eastern Office:        c/o kathy Somers, 248 Currey Cres, Newmarket, ON,  L3Y 5M9

                                Phone:  (905) 853-9849                                          email: kathleen_somers248@hotmail.com

 

 

 

 

Use of Botox in TN Treatment

By Jan Williams from notes of the TNA Conference

 

There have been some very limited studies done on the use of Botox for the treatment of TN.  The first report came from a group of 13 patients in Brazil who were treated with injections of Botox into the skin of the face.  (Cosmetic injections of Botox are normally given into the muscle).  Within 10 days all 13 people reported a decrease in TN pain.  By the end of 60 days, only 4 of the 13 remained pain free.

Since the active ingredient is actually a protein that is a “neurotoxin”, they believe the best results would come from the injection of the Botox into the skin near the trigger points for TN.  Neurotoxins prevent nerves from functioning properly and in the case of TN interrupting the function of the Trigeminal Nerve may be a good thing.

 

The number of patients studied so far is very small and they have not been able to do proper follow-up evaluations or blind study comparisons.  However, Dr. Krusz who presented this session thinks the use of Botox for TN should not be discounted.  He thinks it merits more study.  His closing comment was to “stay tuned” for further information.

 

The Botox used for medicinal purposes comes from one particular strain of the Clostridium Botulinum.  It is purified and processed so that there is no danger of a person getting food poisoning from these injections.    There are currently a few studies on the use of Botox for the treatment of Migraines.  One is being done at the University of California.  Dr. Glogou has reported that 75% of his patients treated with Botox have 4 - 6 months of no migraines.  He says “Though the mechanism for migraine relief is not known, Botox® injections paralyze the muscles in the face and head. Botulinum toxin A may stop the expression of pain by stopping muscle contractions that lead to spasm, he explained, or it may inhibit nerves that transfer pain responses to the brain and spinal chord. In all likelihood, it does both”.

 

 

Transdermal Medications

By Jan Williams from notes of the TNA Conference

 

There is a gel available that will transport different medications through the skin directly to the blood stream.  It’s called “Plueronic Lecithin Oraganogles” or PLO gels.  You might be familiar with the “patches” that are used to deliver birth control, anti-emetics and some heart medications.  This same process can be used to deliver drugs used for TN such as Carbamazepine, Phenytoin and Gabapentin.

 

The main advantage is that lower amounts of the drug are needed since this delivery method bypasses the digestive system and deposits the drug directly into the blood stream.  Because lower amounts are used, the side effects are fewer.  The gel is prepared by a “Compounding Pharmacist” who works closely with your doctor to get the right amount of the drug for you.  More than one drug can be put into each gel so you do not need to take multiple pills.  The gel is normally applied near to the Trigeminal Nerve Nucleus junction – just in front of the ear.  Usually the amount is about the size of a dime and it is rubbed into the skin to make sure it is all absorbed. 

 

Not every Pharmacist is qualified to do this so it is necessary to find a “Compounding Pharmacist”.  There is an International Academy of Compounding Pharmacists who can provide more information and a list of qualified Pharmacists in North America.  Their website is www.iacpx.org

 

Next Calgary Support Group Meeting

Our meetings are held the last Saturday of the month.  The next scheduled meeting will be October 28^th at 2 pm in the MacLeod Trail Co-Op Community room.  We plan to have a 15 -20 minute discussion on surgical complications including Anesthesia Dolorosa.  This is information brought back from the 6^th TNA National Conference in Portland.  Contact Jan Williams at 295-0987 or calgarytn@shaw.ca

 

 

 

 

Next Toronto and area Support Group Meeting

Toronto Chapter meets last Sunday of the month 9:30 a.m. Thornhill Community Centre. 7755 Bayview Ave. Thornhill. North of Steeles. Friends and family welcome. Sandra and Kathy look forward to meeting you.   The next meeting will be October 29^th.

 

"Together we will end the pain"