For me, I had come to come to feel that I’ve had enough. I’ve been suffering with TN for 10 years now an have had surgery twice and it’s still happening. Two, or was it three years ago? I had a terrible time. I suffer severe spasms each one lasting from 20-40 minutes and five to seven episodes a day. These periods lasted for four and two months over a year. I decided that net time I’d finish it. When it came back, I was put on gabapentin and, for the first time, oxcarbazepine. It was the first time I’d taken that and I’ve had no pain at all. Just at the beginning, when it came on. From then on I’ve had no pain, my brain is like porridge and I have difficulty standing up, but no pain, (almost)

Anyone else tried this old, rarely used drug?

glad you have found something to help combat the pain... I take carbamazepine, which may be similiar - but I try to take low doses and put up with some pain, so I can function as I hat to be zonked out. I have also discovered an old 1960's remedy B12 and take 1000mg per day - it has really helped - it is water soluble so hard to get toxic on it and it builds up the nerve sheaths.... this has also helped with needles & pins in my hands & arms.... GP

Hi Roger, no I haven’t tried it, I did try the gabapentin but I don’t tolerate it, it really affected my mood negatively.
I’m really glad to hear you’ve found something that’s working for you! Hope it continues to do so for a loooonnng time!
Thanks for sharing, Mimi

Hi Roger,

I’m so sorry to hear about your pain, but I am glad the new medications are helping.

I am currently on oxcarbazepine (Trileptal) and was on gabapentin for a few weeks. I am taking 1200 mg of oxcarbazepine along with a few other medications and it really seems to help. The downside to the medications is it is pretty sedating.. Two hours after I take it, I am falling asleep. I was on gabapentin which provided some relief, but I couldn’t stay on it because I could barely stay awake and being in college that wasn’t going to work.