Tegretol - anyone been on it long term?

Hi all,

Hoping to open up a discussion with other Tegretol users. I've been on it 9 months and for the first few months it seemed to be doing it's job, attacked my GPN and reduced the pain a bit. However, after 6 months and a mistake by my pharmacy on my dosage, 3 months later I'm still trying to get back to where I was with the drugs last June. In the last few weeks I have headaches all the time particularly around when I take the 400mg tablets (twice a day) - have tried eating some food then a tablet then more food plus plenty of water and lots of other variations of how to take the meds but nothing works and my brain feels like it is sapped of water constantly.

I'm curious to see what other users' experiences of this drug have been and if these symptoms are telling me I've come to the end of my shelf life using Tegretol and it's time to try something else. My worry is that it seems to "work" on the GPN pain and switching drugs before had me bed-ridden in agony for 4 weeks until the new drugs took over. How long has anyone else been on Tegretol, what have side effects been etc?

Thanks guys, Amanda x

Hello Amanda, i have been on tegretol for years and many meds before that. My tegretol was changed by the phamacy to a generic and i noticed a lesser effect immediatly. I told my neuro my theory after a emergency room visit where i was incoherent in pain. He added xanax…,(shut the crazy girl up?) This did not work. I take unacceptable amounts of tegretol and xanax now. I bypassed by my neurologist and found a fabulous neurosurgeon and am scheluled for mvd surgery wednesday! Cant wait! I have to at least try to end this pain. My heart aches for people living with this pain. Please stop back sometime next week or next weekend to see how i did. Of note…i was already needing huge amounts of tegretol before this happened. Its like you just stop responding.

Oh god Laura, my heart goes out to you too! And wish you every thought and luck for Wednesday, you are a brave lady and I hope to never be in that situation as your pain sounds worse than mine. When you are well and back online with us please let us know how your MVD goes.

love and thoughts, Amanda