Hi Shezbut,

I am thankful that your epileptologist was able to help you. Carbamazepine is a good medication and helps a lot of people! I'm so glad it helped so much for you. Having the symptoms gone 90% is a huge help, even though I imagine at times you wish they were gone completely. But 90% is so much better.

I have had really good help for my problem, thanks. I've been living with it for over 20 years. We tried many medications. Some of them helped a bit, but my body wouldn't tolerate them. Some of them didn't help. Now I take Topamax, which is a different type of anti-seizure drug (carbemazepine is also an anti-seizure drug). It is working pretty well for me. I also do other things that help me. I know things that set off my pain, and I am careful to avoid those things. You may learn some things which can be problematic for you, too. If you can take good care of yourself and avoid those things, that can reduce the frequency of your episodes - that remaining 10%. Sometimes it is something simple, like trying to avoid being out in windy conditions. I often use an umbrella to shield my face from the wind if I do have to go out when it is very windy.

The Facial Pain Association is a very good resource. They recently changed their name, as they were formerly the Trigeminal Neuralgia Association. They have a book on Trigeminal Neuralgia they've published called, "Striking Back! The Trigeminal Neuralgia and Face Pain Handbook." I have a copy, and I found it really helpful. As you said, it can feel a bit lonely to have this problem, and part of the good thing about the book was reading it and knowing you are not alone with this problem.

Please feel free to write again. I'll keep checking this thread. I send lots of good thoughts your way!

Take care,
Erin