girl

Toni, I also didn't benefit from amitriptyline. Has your doctor tried you on Mestinon? I finally got in to see a neurologist who specializes in dysautonomia, and she had me try Mestinon for breathlessness, fatigue, and lightheadedness. (It would probably NOT help with the gastric issues, unless by throwing a wrench into things!) If it doesn't work at all, that might be interesting as well; I knew within an hour of taking it that it was helping. My PCP was hesitant to prescribe Mestinon because she wasn't familiar with it, but I'm kicking myself for not persuading her to let me try it when I asked about it years ago.

GardenGal, this sounds so scary. Of course my mind wants to explain it away as sleep paralysis, sleep apnea, or nocturnal asthma, because those are things I understand. Did they ever let you try extended release mestinon? Or were they too worried about cholinergic crisis?

Still don't know what is causing it, but mestinon is addressing it for me. I was feeling too weak and fatigued to lift my spoon to my mouth; I was getting other people to cut my meat at that point!