I feel for you people. I've been driven back to bed far to often, either for pain, or weak, or bad night half sleeping with night terrors thrown in.
I'm going back to the young good neuro I am seeing and telling him figure something out. and at the least, TRY something out. A pill that is used for another illness but might work with this (Parkinson's pills have ben used in untreatable tbi cases with some success for certain issues).
Or a pt regimen that just might work. Something. I' am not leaving his office without something anymore, unless he promises to go home and do research that night. And I'm not kidding. He's really new and excited about helping those tough cases so now is my time to act, if I can make it out the front door to his office
Sorry for the bad day guys.