The Journey Begins
 

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..............?????:confused:

Negetol on the Tregretol!
 

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. :(

There are a lot of meds and combo's for you to try, so hang in there. Talk to your doctor about what to do while waiting for your appt. with the neuro. Dealing with the pain does wear you down, I know, but most anticonvulsants need time to build up in your system before you feel the full effect of them. Perhaps your expecting results too quickly? I had great results with Trileptal, but it did take a couple of weeks. I ultimately had to withdraw off of it because of rare side effects. Most people really prefer it over tegretol because the side effects are more tolerable. Take care!

Are you suggesting that I might be impatient? haha
Yes, I'm sure I am. I decided to increase the dosage as my doctor suggested to 300mg in the morning and 150 in the pm. The double dose gave me quite a belly ache, but I'll see how it goes.
Thanks for your encouragement.

When you're dealing with this pain, we all want relief yesterday! Seriously though, these meds are powerful but do take time to build in your system. If my memory serves me right, Lyrica is one of the faster acting ones. I do hope you start getting some relief soon.

I had horrifying nausea/vomitting & dizziness on Tegretol...ended up in the hospital 01/24 for six days. Was sent home with Trileptal, Percocet, MSContin, Lyrica. I just finished weaning myself off of the narcs, after two fecal impactions :( and all those weeks in a drug induced stupor.

So far, so good on justs Lyrica and Trileptal! Just waiting now for my Gamma Knife!

Good luck!!