Stopping my Medication

I've been taking 200mg of carbamazepine, twice a day since April 14th, 2013. Since starting the medication, I haven't had one incident of sharp, shooting pain. Almost 5 months of relief. I just had an appointment with my neurologist on 09/05/13 & she has taken me of the medication. I'm taking the rest of the bottle I had, but only take one pill a day, instead of two.

Has anyone stopped taking carbamazepine and have any suggestions?

Obviously, I'm worried about my pain coming back. I know I could experience a period of remission and there's really no way to tell, since everything is so individualized when it comes to TN.

Since taking half the meds, I've experienced headaches almost everyday.

I'm just so nervous about going back to being on no medication at all. Before I started this round, I was terrified to leave my house, not knowing when I would burst into pain. I never wanted to see friends, go out to eat, or really do much anything other than sleep.

I've had 5 months of relief and I couldn't be more grateful for that. I got married August 2nd, and didn't have to worry about the pain. No, it's like, I'm taking a step back.

Back to worrying, back to stress.

Any advice, tips or words would be great.


Mrs. Newvine,

Back in 2002 after 8-9 months of bilateral TN, I had been pain free for a couple of months when my Neuro started to wean me off the Tegretol…back then I wasn’t very informed about TN and I wasn’t very afraid either due to my ignorance and extreme trust in my doctor.

He said we would always try to get off the meds after periods of remission because the meds are so bad for us.

That being said, after I had weaned off the Tegretol I experienced an EIGHT year remission on my right side and a TEN year remission on my left side!!!

Let my story give you hope and try really hard not to stress and to continue to focus on your bright future!! Congrats on your recent marriage!

I understand your fear, I suffer from this fear too…all we can do is try our best to push the fear to the back of our minds and NOT let it push it’s way forward!
All the best of wishes for a pain free future!

((( hugs ))) Mimi