this is a miserable disease. Everything you read is pretty much true to my experience, and the experience of the 2 siblings I have who also suffer. I've been enduring sind 1990, sib 1, since 1998ish, and the other from 2012.

Sometimes the drug's side effects are as bad as the pain.

Get a different neurologist, find one who has a speciality with facial, head and neck nerves. If they give you the oh this is common bs, find a different one. Shop till you get a good fit with your son and his neuro.

I have been pretty well controlled with muscle relaxants and Botox injections every 3 months. I did all the anti seizure/antipsychotic drugs and over all, they did more harm to my psyche than they did for the pain. They mostly made me so numb and nearly comatose rather than actually doing anything for the actual pain.

If you are near the University of California, San Francisco, they have a good neuro department there.

Be relentless. He needs you as his advocate.