Triggers and failing meds

General General TN & GPN (Old Site)
1

I have a couple questions for those of you out there who might have gone through the same things:

-Has anyone had neck pain as a key feature? I get sharp pain where my head and neck meet and a little further down my neck, only on my bad side, and pressure on this area is as bad as pressure on my temple, cheek, etc. I can't even lift weights without risking disrupting that area in my neck and causing a huge problem with shocking throbbing pain in my temple/face. Is this part of TN and are there any good ways to address it beyond meds? PT was a nightmare.

-Has anyone had to stop tegretol due to low WBC? Tegretol has been amazing for pain relief, but it's causing my WBC to plummet. If you've faced this, what have you done to fix the situation? Have you risked staying on it?

Thanks for any thoughts or insights!

2

I have had that pain on the back of head just above the neck,especially the first three years pretty constant in afternoon evening hours. I always just figured it was the trigeminal nerve itself hurting. But very painful, I would always rub it, to alleviate pain. I still get it, just on and of not so much anymore. :(

3

Hi, I also had rough WBC with Tegretol, a shame as it worked well for me. With my GP and Liver Specialists help I adopted a low salt, fat and alcohol diet. Nothing extreme, just the sort of lifestyle we are always being told to adopt. This helped counteract the effects of Teg on my liver. I then titrated to Neurontin very slowly.