I have been soldiering through this for coming up a year. All along I have been convinced it is TN, but the chief neurologist on base has settled with a diagnosis of postherpetic neuralgia, in that I may have had shingles without a rash. I have had 2 MRIs that are unremarkable and tired several different meds. Lyrica is the one we settled on at 400mg. This dosage just dials down the pain. Any higher dose and I am out in LaLa Land. I am an artist and art teacher, so most folks don't see much a difference, but seriously, I should not be driving or teaching your kids. For some reason, the pain, which is on the right side, has come back with a vengeance in the past 2 weeks-knife stabs in my ear along with bee stings in my cheek, and burning drips in my chin and lips. Tomorrow I have another appointment on base. Is there any meds that work for you. Tegretol made me violently ill. Thanks, Mary
A lot of patients do better on Trileptal or Neurontin than they did with Tegretol. It may be worth discussion with the neurologist.
Has anybody had any luck with Trileptal?
I've talked with several people who got pain relief from Trileptal with fewer side effects that usually attend Tegretol. Trileptal was "designed" for this combination.
My experience with Trileptal was a little mixed. It was the first med my neurologist put me on and it did a great job from the start except it did make me nauseous and some double vision the first few days. Once that passed though, it worked pretty well on the pain but every few weeks, I would need to up the dose due to frequent and more intense breakthrough pain. As I upped my dose on Trileptal, I got more of those cognitive side effects (memory issues, can't find a word, etc.). As I got to a really high dose to get on top of the pain after a few months on the med, I started having "episodes" that honestly felt like I was on an illicit drug trip of sorts (not that I know for sure what that feels like). It would happen shortly after taking a pill but not every time. It lasted maybe 20 minutes or a bit more and it scared me.
I changed neurologist at about that time and my new neuro changed me to Tegretol XR, which is an extended release formula. He told me the problem with the Trileptal, for me, was at those high doses, my body was getting a "drug dump" each time I took a pill. Only Tegretol is offered in the extended release but I have to say that the cognitive effects of Tegretol overall were a bit worse and it also interacted with my Synthroid meds and sent me into a hypothyroid state. Thankfully, I had a successful MVD two years ago so I no longer need the meds.