What's next? Already done meds, Mayo, oral, meds

My journey started 2 years ago. It doesn’t seem to align to any dental work. I started feeling terrible on the meds and couldn’t remember anything, so I went to the Mayo Clinic. The neurologist thought it was oral related and the neurosurgeon thought he saw enough evidence to do MVD. They scheduled the surgery and the day before we left, canceled! There was an infection below my back tooth on the side of my pain (where I had a root canal soon after the pain started, as a treatment option)…hallelujah! I saw an endodontist, but the pain was so bad, so I had it pulled. No pain for 3 wks, then BAM (@thanksgiving)! Now he says the infection is gone and I’m back to just medicine (which I never went off of). Ive been to the ER recently and they just put me on more…baclofen. I don’t feel like its time to go back to Mayo. I still have a very little bit of hope that it’s not true TN. Also, when they canceled my surgery, they told me there really wasn’t any sign of compression in the MRI (conflicting with what they said when they scheduled it). I also tried acupuncture (during which my face turned red on that side) and am taking B12 daily. I recently went back to trileptal from tegretol and today from gabapentin to lyrica. i have the terrible side effects again. What do I do now??

Wish I knew what to tell you. All I can say is good luck and (((((((((((hugs)))))))))))). Red may have some advice though.

You want to be sure of your diagnoses. I had a dentist who did a through exam and took a lot of xrays and ruled out dental causes of TN. 3 months later I was in MVD surgery and it turned out I had bone compressing the nerve. Give the medication time as the problems you are having now may go away with time. If they are making you really sick you might ask your doctor if they can not lower the dose and up them a bit more slowly. I know scary when one is hurting, but that may be a option. I react badly to medications as well, so my doctor is starting me on the Triliptal very slowly. I started on it a week ago and outside of getting really dizzy the first day I am doing well.

I think it often takes multiple things to get improvement. You might try a different acupuncturist…I lucked out and found one with experience in treating TN, the first two I called had very little experience. Also, I’m using a compounded cream with numbing agents plus Neurontin. I put it on my face where it hurts the most. This BEAST is very very hard. I would consider giving it a little more time and perhaps trying a few more things like what I mentioned. But, certainly no harm in going to a respectable hospital like Mayo if you feel you need more of a work up. Wishing you lots of good luck and many many pain free days.

Sara, MRI- did it show bone compressing nerve? Will any test show that? I’m wondering if I might have that?

Just wondering...were you referring to the Mayo in Rochester, or Arizona?
I am a Rochester Mayo patient....not particularly pleased with my current situation.

Wishing you well.