I've been spending the early part of the summer going to a new neurologist specialist and an ENT that my neuro works closely with. They both feel strongly that it is GPN (although atypical - so I had a bunch of tests to rule out other things like Menniere's, infections, etc.).
My neuro said that they can't see anything on the MRI (no wrapping vessels, etc), so he thinks the nerve irritation must be after if leaves the skull and travels along the face. I'm not sure this makes sense with what I have heard from others on the forum - that with some the issue isn't seen until MVD is actually performed.
What was recommended as a next step for me was a nerve block in the glosso. nerve. This is done under sedation at the back of the throat. At the same time, I will be getting my tonsils out. Yes, at 39, I'm getting a tonsillectomy. It turns out that I have a chronically infected tonsil on the same side as the pain. My tonsils have been this size all my adult life - so I didn't know there was anything wrong with them. I doubt this will have any impact on the pain, but the doctor insisted on doing this - saying he could never rule out the tonsils as interfering if I didn't get them removed.
I'm told that the nerve block will last about 2 months and if it is successful I should have GPN pain relief during that period. Has anyone here had one? I haven't heard of anyone else getting one to solidify their diagnosis.
I'll update afterwards to say if it works...