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.

57 minutes ago, GardenGal said:

I have the same question. Mine is different from generalised weakness however, it's like something 'runs out' or a nerve impulse doesn't travel.. It's hard to explain. Waking up gagging, inability to control muscles for breathing (as in watching my oxygen saturation go down on my home oximeter).... usually happens at night first arms then throat and chest muscles become involved. The first I remember it was when I was on a trial of mestanon. Whenever the dose would begin to wear off I would get this terrifying weakness. Though over all the mestanon made me more functional (able to stand/walk).. it wasn't worth the inability to control my breathing, etc that started an hour or two before my next dose was due, and I quit taking it, but the weakness symptoms have remained. My specialists have kinda waved this off as the beginnings of 'cholinergic crisis'... but I don't think that's it because it was when the mestanon would wear off not when it peaked... It does make me wonder however, if it's neurotransmitter driven. Honestly I don't know, and it's one of my most confusing/terrifying symptoms. Ideas all? It's like I can't move that body part... Like my husband putting my PJs on and laying me down, and then waking up two hours later from a dead sleep gagging cuz my throat muscles aren't working right. 

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?

On 7/21/2017 at 7:26 PM, B-leave said:

I still don't have a definitive diagnosis of dysautonomia. A big concern of mine is the extent of fatigue and muscle weekness. 

Nit enough strength to cut a piece dinner meat. Does anyone experience this magnitude and what caused this?

thanks

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!