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February 1, 2007
Canada TNA (CaTNA) produces a newsletter for its members every other month. It is also available on-line at www.catna.ca. The material is presented for information purposes only and should not be used to replace the advice of a physician. Comments and suggestions regarding this newsletter should be forwarded to Jan Williams, #207, 15 Everstone Dr SW, Calgary, AB, T2Y 5B5 or via e-mail to TNhelp@catna.ca
What’s new with CaTNA?We’ve been busy working to establish a strong support network across Canada. We are delighted to announce that there are 2 new support groups starting in the Toronto area and one in Saskatoon. If you would like to have a group started in your area – please contact us. We’ll help.
There are a number of people who visit the on-line message board on a regular basis. Not everyone leaves a message – but check it out if you have a computer: www.catna.ca/talk. Leave a message if only to say hello.
The CaTNA Implementation TeamThe job of establishing a new organization and getting started is a fairly big undertaking and there is a team of folks who are doing this. Once CaTNA is more firmly established this team will turn over the operation to people elected by the members. Who are we?
Jan Williams, Support Group leader from Calgary. I have been the SGL since Sept 03 in Calgary. I have taken on the responsibility of setting up the web site and looking after the production of this newsletter. At this time I’m also looking after the membership and finances for CaTNA. My TN is under control – no pain and no meds since an MVD in November of 2003.
Kathy Somers, Support Group Leader for Toronto and Newmarket. Kathy has been the SGL for two years. She and Sandra have implemented all kinds of interesting activities for their group. They have social dinners out, have joined the MS Walk-a-thon and have promoted TN in a big way in the community. Kathy has been coping with atypical TN for about 12 years. She had an MVD which was not successful.
Sandra Arangio, Support Group Leader for Toronto and Markham. Sandra has been a SGL in the Toronto area for about 2 years. She and Kathy have provided support to countless folks in the region. Sandra has had atypical TN for seven years. Her MVD was not successful.
Valerie Brooks, is starting a support group on the east side of Toronto. Valerie has had TN since 1997 when she was only 32 years old. She has had several surgeries including a balloon Rhizotomy, Gamma Knife Surgery and an MVD. Nothing has worked for more than a couple of years. Valerie is active on the message board and you can contact her there or if you are interested in attending a support group on the west side of Toronto, give her a call.
Dee Germs, is starting a group in Saskatoon. Dee’s TN story is found in this newsletter. Anyone in the Saskatoon area can give Dee a call.
Gaye Mackie, a member of the Calgary Support group for the last 18 months. Gaye has had TN for 3 years. She had an MVD in March of 2007. Unfortunately this was not successful and she is once again back on medications. However the good news is that the medications seem to be working now.
Tegretol and Osteoporosis
Since the 1960s it has been known that taking Tegretol (carbamazepine) increases the incidence of Osteoporosis. Osteoporosis is most often associated with inadequate calcium intake. However, a deficiency of vitamin D also contributes to osteoporosis by reducing calcium absorption. Tegretol is known to interfere with the metabolism of Vitamin D.
The best sources of calcium are milk and other dairy products, green vegetables, and calcium-enriched products. Vitamin D is found in eggs, salmon, sardines, swordfish, and some fish oils. It is added to milk and can be taken in calcium and vitamin supplements. In addition to what you take in from food, your body makes vitamin D in response to sunlight.
Your doctor may suggest you take calcium supplements along with Vitamin D and folic acid which also helps with the absorption of Calcium.
My StoryBy Dee G, from Saskatoon
About the same time, my Dad was talking to his brother who happens to be a Neurologist with the Mayo Clinic in the USA. Both my uncle and the specialist made the diagnosis of Trigeminal Neuralgia. Since it was late into my pregnancy they decided Carbamazepine was okay. That took care of the pain for a short while but the pain returned. A Neurosurgeon in Saskatoon did a Glycerol injection and the pain went away – FOR ONE DAY. A second glycerol injection was done and that was effective for 5 years.
When the pain returned the next time, I tried a Radiofrequency Rhizotomy – with the hope that the pain relief would be longer than 5 years - but that was only effective for 16 months. So I decided to try another Glycerol Injection in December of 2006. So far it is working and I’m off all meds once again.
I am lucky to have an understanding husband and two great kids. When I am in pain my husband takes over completely and looks after the kids, helps with my in-home day care business and attends all doctors’ appointments with me. He has done a lot of research and knows what questions to ask.
I would like to meet others who are on this journey with TN. I hope that we can get a support group active here in Saskatoon. Please call me if you would be interested in getting together and sharing stories and ideas. My phone is (306)382-5666 or e-mail at saskatoon@catna.ca.
Thank You A big thank you to Christie from Calgary who had a “bracelet party” in her home and raised $450 for CaTNA. She would like the money to be used primarily in support of the Calgary group. This money will be used to print and mail brochures that we will send out to each neurosurgeon and neurologists’ office in Calgary, and to provide brochures to the various medical, nursing and paramedical schools in Calgary. We will also send out brochures to various dental offices in the city. In addition we can send out some brochures to the Neurosurgeon and Neurologists’ offices in Saskatchewan to help get the Saskatoon support group started..
If anyone wishes to know more about Christie’s jewellery, please contact Jan and I’ll put you in touch with her. Nutrition and Facial PainBy Jan Williams
Good nutrition including vitamins and minerals is essential for the normal functioning of the body. There are some that are known to be specific to the health of the nervous system and it is these vitamins and minerals that are prescribed for people who have a problem with the nervous system such as we do with Trigeminal Neuralgia. By increasing the amount of these vitamins in your body it is hoped that the health of the nerves will be improved and the pain decreased.
Mega doses of some of these substances can be harmful. An example is an excess of Vitamin B6 which can actually damage nerves. Normally, you can take a multivitamin pill – but check the label and talk to your doctor before you increase any particular substance beyond the recommended daily dose. Here are the substances that have an effect on the nervous system and the recommended daily amount.
You can join Catna. Annual fee is $10 if you receive the newsletter by email or $16 per year if the newsletter is mailed to you. Send a check to Canada TNA, c/o Jan Williams, #207, 15 Everstone Drive SW Calgary, Alberta, T2Y 5B5 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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• All information provided on this
website is for educational purposes only and should not be used as a substitute
for qualified medical advice.
CaTNA webmaster |
In
1997 at the age of 26 I was pregnant with our first child when I had my
first TN attack. It seemed to come out of the clear blue and initially I
thought it was a dental problem. After several visits to the dentist and
after one tooth was pulled the pain was still no better. I consulted with
an Ear, Nose and Throat specialist and was given various analgesics- none of
which were effective. I was referred to a specialist in Oral Medicine.