I have type 1 TN and am interested in hearing what types of meds other people are one. I am currently take oxcarbzepine. I have been instructed to play with my doses as needed. And I understand that part of it. However, what I want to know is if there is any way to deal with the underlying pain. Lately I have been experiencing flare ups at night. With the shock pains coming first for a few seconds and then being left with the burning boring pain for a few minutes and then the process repeats over and over for a few hours. I am exhausted from not getting any sleep. When the next day finally arrives I can barely get out of bed from not sleeping. Are any of you taking any meds for that kind of pain? I have always been told that narcotic pain meds don't work for nerve pain, but I'm wondering if they work for the burning and boring pain I'm experiencing with the shock episodes. If anyone can tell me anything, that would be much appreciated. I am so happy that I have found this website. What a wonderful and caring community for us all to have.
Hi, I have been prescribed tegretol which has reduced burning pain but jaws still feel numb with shocks when chewing food. still getting stabbing pain in ear at times but am managing to get a sleep. I also take Cymbalta at night for fibromyalgia and this also has sedative effect. I found ibromyalgia pain was the pain that was keeping me wakened and I was only getting periods of about two hour of sleep before getting waked with pains in legs. now sleeping approx 8 hours with Cymabalta. don't know if this will help.
Ann
Thanks Ann, always happy to hear any ideas that people have. It's a terrible thing that we're all dealing with here.
I'm on 400mg carbamazepine.. so far has helped a lot with the pain, although a few shocks still get through from time to time.. I sympathise with your suffering Mainer :(
Thanks Emily. I too sympathize with your pain. I just wish there was an easy fix for it, like we all do.
Hi,
I'm so sorry to hear about the pain you are in. I hope you are able to find something to help with your pain.
I have TN 1 on my left side and am on multiple medications with some of them working better than others. I am on Trileptal, Topamax, Clondine patch, and Mexiletine. The trielptal and clonidine patch really work for me. The mexiletine helps not as much as the other too and the Topamax isn't really helping.
Lidocaine patches on the face helped me keep my
med in the bottle at a lower dose than without the patch or the cream.
Please Please get the book "Striking Back" by Dr. Ken Casey --- (kinda our bible around here)
the more you learn about this in a short amount of time - the higher your chances of finding the best pain relief for you.
This is not a disease to wait around on doctors to tell you what to do next - that's why we are here for each other - we grab knowledge and share it -- we here - combined - know more than most neruologists in a big city combined about TN.
We are rare and farrrrr from a cure.
Education is just as important as medication as you start your journey.... Only doctors with TN patients are the ones you should see .... welcome !!!!
Keep Posting!