I too have PAF, diagnosed 3 years ago. I had the tilt table, sweat test etc. and the Syn-One test. One of the biopsies had the folded alpha-synuclein present. I have orthostatic hypotension, pain in legs and out of breath going up stairs, severe sweating and intolerance of heat and humidity (great for Chicago!), some days I don't have much energy, ED, and stomach motility issues. Also, maybe once every month or so, I'll walk the dog and sweat profusely and loose all energy. I have to be picked up by my family. I think it feels like a diabetic would feel. I have to eat a protein bar or candy and I feel like crap for several hours afterwords. I have used a blood glucose kit and my blood glucose is normal.

Most of these symptoms have been somewhat reduced by taking 18mg of Atomoxetine (I tried Midodrine but had bad side effects. ) and meds for my stomach.

I get by pretty well most of the time by restricting over exertion. The odd thing is that the symptoms seem to come in waves with no apparent cause I can suss out. I can bicycle easily and it was explained that the pumping action of the legs pumps blood up the body and thus no issues! Two days ago

I haven't found any other support group where we can share issues, ideas and solutions. I hope this may be the group. Thanks