So here I am after a 2 year remission

General General TN & GPN (Old Site)
1

I am back. After 2 1/2 tears of no pain, TN has raised it’s ugly head. For a month I had twinges of numbness and pain and then a week ago the pain slammed into my face. I have atypical TN with occasional electric shocks.

My regular doctor is referring me back to the center at OHSU. He also said that in his experience the second round is not as bad. But I have read that is not right. I am wondering what everyones experience is?

Also, any thoughts on medications? I can not do tegretol. The side effects are devastating. I am am an attorney and have my own practice. I cannot be a zombie. My regular doctor put me on prednisone for short term. He then put me on gabapentin. It seems to lesson the pain, but again, the side effects are bad. Some days I can not drive. As a single mom, that is not an option either.

I realize I have little choice. I just need to manage this thing the best I can. And right now I am scared.

2

I have had 4 years nearly pain free certainly a significant decrease in pain. I have typical TN. Three weeks ago I was also slammed with pain. I increased Lamictal (which I have still been on since Gamma Knife). Neuro added Baclofen and now Trileptal. She also suggested I contact surgeon to discuss repeat GK. Has anyone had GK twice? What is success rate and implications

?

3

Lisa what worked for you last time? Have you been taking medication for the last couple of years? Did you have a MVD? Sorry to hear its back but as you managed to get it under control before I am hoping it will happen again. x

4

Carbatol and gabapentin. But I was not working so the side effects did not matter.

Gabapentin this time had messed withnmy balance, I slur my words and have a problem thinking.

5

No MVD. After 9 months, it just stopped and I had 2 1/2 years pain free.

6

Why do natural remissions occur and if they have happened once can they not happen again?

7

My dr said remissions are natural and happen more often than not. But who knows?

8

Hi Lisa,

I've had great success with the tricyclics and using gabapentin. Use the gabapentin to stop the episode, short term only 4-6 weeks (I'm allergic to these) and then fall back to just amatryptaline. That way you get to keep your brain cells mostly. Hope this helps :)

9

I also had trouble with tegretol. Trileptal and amitriptilyne (along with a few others) help me work full time with two kids. I’ll be heading in for MVD x2 next week so there’s something going on in there because the pain is still “breaking through”. Isn’t that funny terminology? Break-through pain… Sorry buddy but but nothing is “breaking-through” there’s just no wall here ya see… But nice try…:wink: