First of all, I've not been definitely diagnosed with TN, other than the E.R. doctor giving his opinion that it appears to be. I've had this left facial pain for about 18 months now and over the past 6 months it has increased in severity and frequency. I went to see my dentist last Sept., thinking it was a tooth problem. He removed an upper molar that was broken, but the pain problem didn't go away, nor was it near that tooth to begin with. I recently had sinus xrays and a CT scan done and both came back negative. So now I begin my search for a neurologist, which should be a challenge since I live in the "boonies". I've spent most of the evening reading a lot on this forum and it has been both enlightening and frightening. I think I'd rather have a tooth problem! At any rate, this forum looks like a good place to call my "TN Home".

P.S. I am a (almost) 53 year old male with severe Scoliosis.

Creekman, welcome but sorry you have to be here. It sounds like the ER doctor knows his stuff. I'm sure you've read about a lot of us who have had teeth pulled, were treating for all sorts of other ailments, only to be left in/with pain. Find a good neurologist and since you have to travel, ask for one who has treated the condition before, if at all possible. Take care and best wishes, Ellena

I had an appointment with my family doctor yesterday and he also seems to think I have TN. I was a bit disappointed he didn't recommend that I see a neurologist. Instead, he prescribed 200 mg of Tegretol (2x/day) and wants to see me again in two weeks.

I have a "feeling", after reading all night online, that my TN may be caused by the Chiari malformation and Syringomyelia I have, along with my Scoliosis. I was diagnosed with the Chiari, etc... 6 years ago, and saw a neurosurgeon about it in Pittsburgh, but he didn't think it was large enough to worry about, unless I started having symptoms. Hmmmmmmm..............?????

Well, it's a negative on the Tegretol. I took 4 full doses & then 4 half-doses and with both I had the following side-effects: extreme dizziness, nausea, headache, dry mouth, tingling in tongue & lips. I was so dizzy I was not able to walk or stand without holding on to something. Even after 27 hours after taking the last half-dose, I was still very dizzy. My doctor's office called this afternoon and said to stop the Tegretol and start a new med (which I will probably pick up tomorrow afternoon...don't remember the name of it).

Let's hope for better results. (Although....on the Tegretol, I did have about a 30% reduction in the facial pain.)

Welcome Creekman.

I'm thinking about going back on low dose of Neurontin/Gabapentin. Let us know what they try you on next. I'm curious because I too have had issues with anti convulsants and side effects.

Tegretol 2 days for me, 4 pills a day and that's when I got whacked with the strangest side effect I've ever experienced on a drug. Pitch perception changed, but only when listening to music. It was freaky as heck. I stopped taking that drug immediately and didn't ever take it again.

I have now been on Oxcarbazepine (Trileptal) 150mg twice/day for ten days and it has had no effect at all on my pain. The bright spot is that there have been no side effects either. Went back to see my family doctor last Friday and he wants me to up the dosage on this, but I'm not so sure I want to do that. I also have an apptmt with a Neurologist on 3/19.

I'm tempted to go back to a low dose of the Tegretol. At least with that I was getting some relief from the pain. I sure am getting weary.