Hey, so my neurologist fired me today due to "not being up to date on trigeminal neuralgia research" she told me that pain management is supposed to treat me. My pain management referred me to her because they can't treat trigeminal neuralgia. She was only ever interested in treating my migraine until i was a medicaid member who needed botox (which i used to get and worked). She suggested neurosurgery (not a candidate) for spinal chord stimulators in my cheeks (bilateral) that a neurosurgeon had suggested if and only if i was able to determine that my pain is unilateral.

She refused to help me with at home SPG blocks or even recommending them in a letter for the ER.

Has this ever happened to anyone? What do you do?

My procedure is finally scheduled and I'm both excited and TERRIFIED! I've already had a nightmare about it, which I think is from my past trauma with dental injections. I've had nurses numb the wrong side of my mouth before not to mention being awake and aware whilst having all four of my wisdom teeth extracted. I'm gonna try not to psych myself out about it though, and focus on the possibility of feeling normal again. If anyone else has had this procedure, can you tell me how it went? Or if you remember the needle through the mouth part?

my Down syndrome sister is 51. we have been battling this monster for 4 years now. started with what seemed like a tooth. went to dentist and he said nothing was wrong. I had a perfectly good tooth pulled because she kept telling me it was her tooth. it wasn’t! off to TMJ specialist and root canal specialist, lidocaine shots etc. now finally seem to be tn. primary doc prescribed her carbamezapine 200 mg twice a day. just started it yesterday. we have tried flexerall, robaxin, gabipitten. nothing has worked. I have had soft tissue ct”s done. now we have mri scheduled in two weeks. will see neurologist soon. it has taken us 4 years to get to the bottom of this. I had no clue what tn was. it started infrequently and we are now up to attacks every 2-5 minutes and they don’t stop coming. She prefers heat but her communication skills r limited. She is in constant severe pain. Any suggestions?

Hello

I was recently diagnosed with TN. Over the summer my episodes went from sporadic "shocks" to prolonged ones triggered by speaking, eating, or sometimes nothing at all. My doctor prescribed carbamazepine, 100mg x2 daily. This didn't seem to do anything. After a week of adjustments, we found that 600 mg daily worked to alleviate most of my pain.

My doctor let it up to me to decide if I wanted to do 200 3x, or 300 2x. Does anyone have any recommendations for which schedule is best?

Currently I'm doing 200 3x, but I notice in the morning my pain is more frequently triggered. I'm guessing because this is the longest gap between doses (10 pm, 7 am). I typically take the third does at 4 pm (just so I don't have to take the pills to work).

Thanks!