Bilateral TN - any tips?

[FourPaws]

I'm on the top level of carbamazapine and gabapentin. This is the first relapse that it isn't controlled by those two and the first one that I'm having it bilaterally vs just in my left side. I think it's part of what helped diagnose me.

The problem is I don't know what to do about it. I've been in this relapse for about 2 months now, but the last two days have been the hardest for the TN. It's really sucky. Any tips/help/ideas? Cause ouch.

[22cyclist]

I'm on the top level of carbamazapine and gabapentin. This is the first relapse that it isn't controlled by those two and the first one that I'm having it bilaterally vs just in my left side. I think it's part of what helped diagnose me.

The problem is I don't know what to do about it. I've been in this relapse for about 2 months now, but the last two days have been the hardest for the TN. It's really sucky. Any tips/help/ideas? Cause ouch.

OH FOUR PAWS! I can definitely relate! I have bilateral TN too. And boy does it hurt at times. The medication I have found that keeps it most under control is Trileptal. Tegretol and Gabapenten doesn't cover it completely for me.

Trileptal was my saving grace. It is just a new generation Tegretol. Since you are in an active phase you might consider IVSM. Although I just went through a 5-day course and still had problems. But a few days after the treatment ended it finally stopped.

It is a crap shoot for sure. TN is hard to treat. Trileptal keeps mine pretty much under control. It controls the spasms and twitches too. I also have glosopharngeal neuralgia bilaterally as a bonus. It controls that pretty much. Both are from brainstem lesions. TN lesion V, GP lesion IX, X.

Fun stuff. I hope you feel better soon.

Ask about trileptal for the pain. If it doesn't help, ask for some steroids.

Lisa

[FourPaws]

Thanks Lisa - so replace the Tegretol with the Trileptal? We're thinking of switching out the gaba with Lyrica too. Good ideas - you're often left floundering trying to figure this stuff out. Does the Trileptal come with fewer side effects?

[22cyclist]

Thanks Lisa - so replace the Tegretol with the Trileptal? We're thinking of switching out the gaba with Lyrica too. Good ideas - you're often left floundering trying to figure this stuff out. Does the Trileptal come with fewer side effects?

Yes, quite fewer. It is actually a newer generation Tegretol, so better benefits, less side effects.

Lisa