I think the best thing I have done in the last couple of years is join this site - I have ear pain as I am typing this and just happen to have yet another doc appt later. He has never used this term but do have ear pain most of the time as well as tnII and "brain pain" from MVD - but now I can go to him with this name. I thought it should be the other way around??
Taking neurontin, vicodin and clonopin to sleep - any suggestions are more than welcone - I have seen baclofen talked about on here and have not tried that one yet - so will ask the doc about that as well.
anyway - thanks to all for sharing your pain stories - sad but good to know not alone.