Mayo Clinic Connect
My close friend is searching for help with treatment options for TN with hypoglossal involvement. Tegretol is not working. Any ideas to help her?
my husband suffers from this disorder also. it very very pain full every few months it will flair up.what helps him is red wine im serious there must something in it that helps. 1-2 glasses is all it takes , good luck
my trigeminal neuralgia was caused by a dental injury and is called atypical. I take very strong pain meds as the tegratol and other drugs like it didn’t work. Your friend should, if she hasn’t already see a neurologist at the mayo. Your friend shoul ask to try all of the drugs ,like tegratol that are used to help but which don’t always work and have plenty of side effects. she should ask about brain surgury…. Im absolutly going down that road as soon as possible as pain meds are only effective for so long and from what I understand the sooner this disease is treated the better. I’ve been warned against alcohol injections, gamma knife or any invassive surgury to kill the nerve. Your friend has to be very proactive and keep getting treated. I don’t know anything about the seriousness of her problem and don’t want to scare you, but there is hope . I would be very careful about taking the advise of any neurologist except those at the mayo as I almost had a procedure that would have increased the pain. Be careful .Distraction helps when I can concentrate, having a friend is so important. I find that if I try to do simple things I can increase the pain. physical excersise exacerbates it as does heat, cold etc. I’m sorry if I’m telling you things you already know .Look up everyting you can on the diseas and use your head. I havn’t found any quick fixes just tell your Dr. everything and don’t wait and assume a new syptom will go away. It has taken me 18 months of tests and numerous Drs to finally get to this point. When I finally was approved to go to the Mayo Clinic and went, I realized how close I had come to making some terrible mistakes. I hope your friend is a patient there. All the Best
Thank you. She has recently begun taking Namenda, a drug used often to treat Alzheimer’s. She has had significant relief. We are hoping this med will continue to benefit as she had gotten to The point of not being able to go
Anywhere for fear of an episode. We will see if this works.
version 22.214.171.124Page loaded in 8.461 seconds