February 2008
Our winter 2008 newsletter is now available online. It features a new section "Victory Stories." This section is devoted to YOUR stories - but with a twist. Many people with TN live with this disorder and cope with it on a daily basis. We would like to feature stories about how you LIVE! Tell us the joys and victories of your life. Tell us your secrets of coping that let you celebrate life. The purpose is to encourage each other as we travel this journey. The first story talks about taking a huge challenge - that of climbing Mount Kilimanjaro, not an everyday event especially for a 'neuralgian' but ... check it out in the newsletter!
August 2007
Our summer newsletter is now available online in the members only section.
The results of the TN Impact study are available in the newsletter! Thank you to all who took the time to complete and submit a questionnaire!
May 2007
How does TN impact your life? How do the meds you take affect your day to day living? TN is taking a survey to find out the ways in which our members are impacting by life with TN. Click
here to take this one page survey. You can either print the form and return by mail or click on the email link at the top of the page to forward by email. Note that if you forward by email you do not save first, just check off the boxes and submit!
We are hoping to have responses by the end of June and results in our next newsletter.
Thanks everyone!
TNAC announces a new support group - the Eastern Ontario Support Group. Our first meeting is Saturday May 26th at the Good Companions Centre in Ottawa. For more information contact Jane at 613.936.6977
We also would like to link you to support in the Quebec area. Please contact Stephane Bourque at sbourque@aqnt.org or check out www.aqnt.org
March 2007
TNAC becomes a part of CBANHC ...
The Canadian Brain and Nerve Health Coalition (CBANHC) was established by the CNSF in 2002. CBANHC, a coalition of various voluntary health organizations with an interest in neurological disorders, is committed to improving the quality of life of Canadians by promoting access to cost-effective treatments, supporting research and education and promoting public and government awareness of the incidence and impact of nervous system disorders and injuries.
CBANHC/CNSF has partnered with the Canadian Institute for Health Information (CIHI) and the Public Health Agency of Canada to produce an analysis of health services utilization costs associated with various neurological conditions. The analysis will serve as a baseline of information about neurological disorders across the country and act as a foundation for future CBANHC/CNSF initiatives aimed at better understanding neurological disorders in Canada and facilitating data collection and analysis.
Mission Statement
The Canadian Brain and Nerve Health Coalition is committed to improving the quality of life of Canadians with brain, spinal cord or nerve disorders and injuries.
Goals
By working with all of its members, the Canadian Brain and Nerve Health Coalition will:
Promote timely access to cost-effective medicines, treatments and health services including rehabilitation.
Promote and support research and education relevant to the optimum health of people living with the effects of
disorders, diseases, and injuries to the nervous system.
Promote public and government awareness of the incidence and impact of nervous system disorders and injuries.
This June the CBNHC will be releasing a study on the impact of neurological disease and disorder. TN is to be mentioned in the study. TNAC looks forward to working with CBNHC in the future to strengthen their knowledge base on TN and continue to advocate across the country for people impacted by this disorder. For more information on CBNHC go to ...
November 2006
TNAC is pleased to announce that a new board has been formed and will be in effect as of December 1, 2006. We thank you for your patience during the transition and look forward to serving you in the future!
November 21, 2006 - News from TNA
TNA Headline News is a bi-weekly service provided by the Trigeminal Neuralgia Association. The content contained herein is presented for your personal information and is not endorsed by TNA.
Drug Prescribed For Migraines And Seizures Found To Increase Risk Of Kidney Stones Topiramate (Topamax), a drug commonly prescribed to treat seizures and migraine headaches, can increase the propensity of calcium phosphate kidney stones, researchers at UT Southwestern Medical Center have found.
A study -- the largest cross-sectional examination of how the long-term use of topiramate affects kidney-stone formation -- appears in the October issue of the American Journal of Kidney Diseases.
Several case reports have described an association between topiramate and the development of kidney stones, but this complication had not been well recognized and physicians have not informed patients about the risk, the UT Southwestern researchers said. More important, the mechanism of stone formation was largely unknown previously.
"The wide-spread and escalating use of topiramate emphasizes the importance of considering the long-term impact of this drug on kidney-stone formation," said Dr. Khashayar Sakhaee, senior author of the study and chief of mineral metabolism at UT Southwestern.
More than 29 million Americans suffer from migraines, with women being affected three times more often than men, according to the National Headache Foundation.
"Topiramate is probably one of the most commonly prescribed and most effective neurological medications right now," said Dr. Dion Graybeal, assistant professor of neurology and an author of the study.
Dr. Graybeal and other researchers at UT Southwestern say the next step is to develop a way to block the development of kidney stones for users.
The study comprised two phases. Thirty-two individuals already being treated with topiramate and 50 normal volunteers were enrolled in a cross-sectional study in which their blood and urine were tested for kidney-stone risk. A short-term study also was conducted in seven individuals to assess stone risk before and three months after taking topiramate. All patients were evaluated at UT Southwestern's General Clinical Research Center.
Researchers found that taking topiramate on a long-term basis, or for about one year, caused systemic metabolic acidosis -- a buildup of excessive acid in the blood -- as a result of the inability of the kidney to excrete acid. Topiramate use also increased the urine pH and lowered urine citrate, an important inhibitor of kidney-stone formation.
"These changes increase the propensity to form calcium phosphate stones," Dr. Sakhaee said.
In the short-term study, urinary calcium and oxalate -- a chemical compound that binds strongly with calcium and is found in most calcium stones -- did not significantly change in people taking topiramate.
Kidney stones are solid deposits that form in the kidneys from substances excreted in the urine. When waste materials in urine do not dissolve completely, microscopic particles begin to form and, over time, grow into kidney stones.
Before this study, the rate of kidney-stone formation with topiramate was reported as 1.5 percent. The low incidence rate may be an underestimation due to the short length of observation and the lack of ongoing kidney-stone surveillance and data collection for this drug, said Dr. Sakhaee, holder of the BeautiControl Cosmetics Inc. Professorship in Mineral Metabolism and Osteoporosis.
"There is a legitimate concern for the occurrence of kidney stones with long-term topiramate treatment," said Dr. Sakhaee said. "Studies are needed to explore optimal measures to prevent kidney-stone formation with topiramate use."
Other UT Southwestern researchers contributing to the study were Dr. Orson Moe, director of the Charles and Jane Pak Center for Mineral Metabolism and Clinical Research, Dr. Naim Maalouf, assistant professor of internal medicine and Dr. Brian J. Welch, a postdoctoral fellow in internal medicine.
The research was supported by the National Institutes of Health