Succes so far
 

After 2 years of trying to get a diagnosis, my rheumatologist (new) referred me to a neuro-ophthalmologist for a diagnosis of my facial pain.

In that 3 hour visit, the neuro-ophthalmologist did what 4 other neurologists were not able to do, she diagnosed me with Trigeminal Neuralgia. I marked the day on my calendar, July 16, 2009. So it has only been 2 months or so since diagnosis.

I started on neurontin, but had side-effects similar to Lyrica.

Now I am on Tegretol, 200mg, 3x a day. I stay on a semi-soft diet and try to avoid triggers as much as possible. I have been on the Tegretol for 7 weeks and have been doing very well the last few weeks. My diagnosis was confirmed by my new neurologist on Sept 11, 2009, who will manage my care.

She found 2 other problems that are causing other problems, I will post about them elsewhere. The journey is not over yet, but at least I have a doctor who listened and believed my story/history.

I hope it helps some of you to hear that someone is having some success with treatment. I am thankful for each day that the pain is so very low and not taking over my life. I do have times of breakthrough pain when something triggers it. They are hard as ever but do remind me that things are better than they were. I hope the Tegretol works for a very long time.

Things can change, but for now, I won't worry about that. It has been a very long, very difficult journey with pain that put me in the behavioral care unit one time.

:grouphug: to all of you who are struggling with the pain--
cherry flavor lifesaver54

Trigeminal Neurapathy
 

Hello. I am new to this forum and have suffered with Trigeminal Neuralgia and Neurapathy for over one year now. I have been on many meds but not Tegretol and I'm thinking of asking for that one next. I'm currently on 2400 mg of Neurontin and 200 of Savella per day. I was on Cymbalta with the Neurontin but that didn't seem to help much. The Savella doesn't either honestly. Anyway, I notice your post was several years ago and I was wondering if you could update on your progress and/or treatment plan? thank you!