Hi Everyone,
I have weaned myself off the tegretol and am only having minimal pain/ache in my ear, jaw, teeth. It has only been one full day with no doses of tegretol. Is this remission? I’m afraid the pain will return. Also, feel a bit nervous and jittery, didn’t sleep well past few nights. Woke feeling nervous. Is this from withdrawing from the tegretol?
Thanks for any of your thoughts on this.
Hi Jamie,
I took myself off tegretol a long time ago seems like it make my pain come more often,i hate putting drugs in my body only if i have to i do take a hell of a lot of painkillers when i have a flare up but i seem better with out meds all the time stress is a good thing to keep on a low helps me alot i do think there is a link between TN flare ups and stress,stress dose crazy stuff to your body.anyway takecare jamie
mina =-)
Hello jamie leigh,
Let me start by saying I’m no doctor - but it was suggested to me, to not withdraw totally from these meds, as even if you are in remission - the pain when it return’s can increase. I was told to stay on minimal teg dose even though I wanted off it completely. Did you find that Teg helped you while you were taking it? I do hope your weaning off the tegretol has been with your doctors supervision?
In regards to your feeling nervous, jittery etc., that “may” be a combination of two things - for one, it began prior to your having fully weaned off - so anxiety about potential pain returning once you’re off meds will have been on your mind unconsciously during the weaning process and two - yes, tegretol may have withdrawl effects, if you weaned off it too fast. They will fade. But anxiety over pain returning will most definitely keep you awake. I am proof of that - i have had insomnia now for 2 years from both the pain itself and the fear of the pain. My touch triggers would and still do include pain starting from lying down on my pillow :-(. So this made it very difficult for me to sleep at all.
As Tamina has said - try to reduce any stresses in your life as they may cause trigger attacks also. It is good to occasionally have med holidays, but keep in mind - remissions may last a year, or it may only last a few days. I am not saying that to frighten you - it is SO very different for all of us - and remissions follow no rule book.
So for now, I’d reccomend doing a few light activities you enjoy, ones you know don’t trigger TN, watch some good movies, read a book, catch up with friends & family. Just things that normally would DE-stress you 
and try to read something light and entertaining before going to sleep - as usually whatever is last on your mind before sleep - is what your mind thinks about unconsciously through dreams and thought while you are sleeping - hence why you wake feeling nervous and or anxious.
Take care and remember, enjoy each and every pain free day as they come - it’s something we have to learn to do - but if you’re not in pain - enjoy it as much as possible! Go out and smell those Roses!! :-).
Best wishes to you for many more pain FREE days as possible Jamie leigh!
Cheers ~ Kerry xx
Hi Jamie,
Unfortunately, I truly don’t feel you’re having a “remissionary period”. When you have remission, you have no pain at all. (But, like me at this time, it always returns! ugghh!) I’m also not a doctor but I’ve been told by my physician to maintain a low dose of my Neurontin during times of remission. If you are still having some dull pain, I feel, in my very unprofessional opinion (but EXPERIENCED OPINION!!) you should jump back on your Teg. I’m praying for you, dear. Blessings, Stacy
Jamie,
I agree with Stacy. I was told to maintain at least a certain dose for at least 4 months. And that if I was feeling any pain, then do not decrease the medicine. My neuro stated that if I am feeling any pain at all, then it can come back.
Liz
Thank you everyone. I took your advice since I was still having some aching and slight pain. I’m taking the lowest dose of teg. now and will see the neuro surgeon Monday…thanks for your advice. I hope and pray we all find relief.
Jamie,
You are very brave, & persistent. You are your own best advocate. I hope you have a pain free day.