Eight years suffering with TN. Undiagnosed after many MD and facial pain specialists for a long time, until I fortunately met a neurosurgeon who instantly diagnosed the condition, mentioning a few drugs that might help before surgery might be considered.
Medicating at first with Tegretol, the neurosurgeon warned that any medication might work for a while and then cease effectiveness. Sure enough, after about two years, there was a painful attack unaffected by Tegretol. Then regularly visiting a neurologist, we switched meds. When that failed to stop attacks, the neurologist said it might be time to consider a laser procedure.
We made one more med approach, which he combined with Tegretol and I seemed fine for some more years. Then, again no amount or type of medication had the least effect.
Over the years, my suspicions arose that these bouts with TN (at least perhaps in my case) are actually periodic attacks without any relation to medication whatsoever.
The most horrible facial/jaw pain, afflicts me for about a week, during which talking, eating, drinking or mere mouth or tongue movement is excruciating, no matter what drugs I take; then it seems gradually to go into remission. Could be for years.
I was considering GammaKnife and the like (though I can't afford the $100,000 price-tag; even with Medicare, best share would be $20,000), and am reading about low-laser approaches and also relief from Vitamin B-12.
Shared opinions appreciated.