Sorry to hear about the diagnosis. There does seem to be typical symptoms as well as more disparate symptoms and severity of the disease. My symptoms are dysautonomia, (feeling dizzy or faint upon standing from a sitting position). Lower energy, sensitivity to heat (feelings of sweating and being cold at the same time), weakness in legs going a set of stairs and then feeling light headed and out of breath. Digestion issues (I see a Neuro Gastrointestinal Dr.), and occasional bouts where I am walking and loose all energy and have to sit. I always have a protein bar with sugar in it to help if my energy is down.

I take 18mg of Atomoxitine which is a ADHD medication used off label to help with PAF symptoms. Others use Midodrine and other medications. There are no meds specifically for PAF. I think exercise is important and I go to a Functional Fitness trainer who works within my specific issues and really emphasizes balance. I also wear compression stockings which work just OK. I have ones that go up to my thighs.

I do find some days better than others.

You need to have a great Neurologist who specializes in Dysautonomia or is very familiar with this disease. Do you live in an area with these types of specialists? It can be hard to find these Doctors and even in Chicago there are only a couple who really work with PAF.

Good luck and let me know if you have further questions.
Gary