I have been trying to reply all day but it is hard as this brings back some of my darkest painful times of my own "journey" .
I am sorry for all you have been threw and are dealing with every day.
Yes there a a few of us here who have A.D. some are left with meds as the only options as any surgery will make it worse. other have had Stim surgery. There is the PNS and also a more difficult evasive Motor cortex /deep brain stimulation. ( MCS, DBS )
So my suggestions..I have a few
Get A NEW NEURO DOC.RIGHT NOW!
File a law suit and sue the one who did your surgery. You only have a certain amount of time to do this and each state is different so check into that a.s.a.p.
find a good oral surgeon . long story but I have had my jaw wired 2 times , steel plates and screw on each side of lower jaw . if you have a fracture you want a really good oral doc! and an even better neuro doc. I do not believe lowering and getting off neurotin and having no meds at all
is going to cause you to be pain free . I am sorry
Please have your regular doc refer you to a pain specialist and a neurologist that is knowledgeable with face pain and T.N. and ask them both what options you have to help lower and control your pain.
believe me when I say "your not alone" . keep posting let us know when you get apt with a new neuro and remember we are here for you .
Keeping you in my prayers and sending you Hope , low pain and good energy.
edit to say welcome to Neuro talk's .T.N. forum there are plenty of great understanding members here and we all hope you find this forum, Helpful supportive and a comfort of sorts.