Neuro appt this morning

Well, saw my neuro this morning…as I’ve been having breakthrough pain (2 weeks now) he gave me a prescription of Neurontin ( we had discussed this before) not pleased to have to add another med ( currently on 1600mg Tegretol) but I know I have too for the short term at least to try and get this pain under control.
I’ve had lots of side effects from the Tegretol since last year.

We discussed MVD at my request, he didn’t think I would be a candidate based on the fact that my TN is bilateral. ( pre meds it starts on right side electric shock like pain with triggers and then on meds my breakthrough pain occurs on left side and is more like ice pick in my ear along with constant boring pain in my teeth and gums/jaw)

He did say that he would refer me to neuro surgeon to get his opinion and that I shouldn’t be discouraged as he has had patients he has referred whom he thought wouldn’t be candidates and in fact the neuro surgeon in fact did perform surgery.
I also went to lab and had routine blood work taken due to high dose of Tegretol, last time was in May.
I have a follow up appt to see my neuro Dec.12th.

Tomorrow I am off to hospital to have VNG/ENG test to find out if dizziness and unbalance that I’ve had since November is an inner ear problem OR a side effect of the Tegretol. This is my last ear related test.
My ENT thinks I had BPPV and am just healing from that, my GP and Neuro think it’s from the Tegretol.
So, that’s where I’m at. Off to catch a nap…(( hugs )) to all. Mimi

I'm soooo glad your doctor can admit that he isn't an expert in this!!!!

It's rare. You are good to go get a second opinion and that is great! It takes some people too many years of suffering before that point comes!

Have you ever tried Rx Lidocaine patch on either side of your face?

Keep Posting!

Mimi, I will be interested in hearing how you fare at the Neuro’s… Although I am pain managed at the present time, in every other respect my Bi TN is identical to yours. My neuro is reluctant to refer me to a neurosurgeon while I am pain managed but says she will if that ceases to be the case. I hope your visit went well.

Thanks KC & Jackie, I was pleased with the visit, I’m just worn out from the breakthrough pain, physically and emotionally !
KC, I forgot to ask about the lidocaine patches BUT I’ll ask my GP on Friday!!

Jackie, I’m keeping an open mind , truth be told I’d rather not do surgery ( it scares me) but I also do not want to be on high dose of meds for the rest of my life! I was quite happy at 800 mg Tegretol, I was pain free and able to work etc. I hate that I’m on 1600 mg and now adding Neurontin. The side effects of the higher dose of Tegretol are impacting my ability to function “normally”.
So yes, it’ll be interesting to hear what the neurosurgeon thinks…

((hugs))