As far as NORD goes, I see that IH is not on their list of rare diseases. Maybe that's because the focus on IH is new compared to Narcolepsy which I have. I'm really a narcoleptic with symptoms very much like IH, and Xyrem/Xywav is used to treat both.

Perhaps you could tolerate a low dose of Modafinil or Adderall, but from what you say I'm not sure you want to do that. I'm not doctor of course.

Caffeine does nothing for me!

Good luck.