Hi Billi,

I'm so sorry to hear of your pain, and the problems you've had with dental procedures, too. If it really is related to your trigeminal nerve, sometimes people go through dental procedures, thinking the pain is coming from a bad tooth, when really the pain has come from the trigeminal nerve all along. It can be very difficult to diagnose.

I've taken Dilantin, and it didn't cause any problem with my cerebellum, as you describe. I think that is probably a very rare side effect, and probably at extremely high doses. Sometimes high doses are used over many years for people who have seizure disorders. Tegretol is usually the first-line medication for trigeminal neuralgia, and tends to be more effective. Unfortunately, many of the anti-seizure medications do have side effects, most notably problems with liver function, so if you take them, one generally has to be monitored to make sure your body is tolerating them OK. Drowsiness is also a common side effect, although sometimes your body adjusts and that becomes less noticeable after a month or two.

I now take Topamax, and for me, it is a much better medication. It is not processed through the liver, so it is safer in that regard. It does have other side effects - they all do. It doesn't resolve the trigeminal neuralgia symptoms completely, but it does help. I also have chronic migraines, and with that, it is a miracle drug. My migraines are almost totally gone with the Topamax. In fact, that's why I started taking it. The fact that it helps some with the trigeminal neuralgia is a bonus. Now it is approved as a treatment for trigeminal neuralgia also.

I don't know if any of this is helpful or not, but I'm so sorry you are having this pain, and hope that it will ease somehow soon. There are other things you can do to help, like eating soft/pureed foods. Different things help different people. Some people find that limiting talking helps, and being careful about vibrations and wind. There are other ways of coping, too. The TNA Facial Pain Association offers support and information:

http://www.fpa-support.org/

I'll post the website here for you and any others who might find this thread and also who might have trigeminal neuralgia.

Thinking of you,
ErinBear