Re Living with PAF: I was diagnosed at Mayo about 4yrs ago, had whole battery of tests
due to feeling a weakness in my lower legs indicating big drop in BP was coming on with narrowing of perepheral vision.
As well as “grinding” type pain
starting at neck, winding downward toward shoulder blades ( I learned later Neurology refers to this pain as
“Coat hangar pain”). I only fell one time, w/o injury and started on Mestinon 60mg 3x a day—BP plummeting events improved with only 1 increase in dosage. Besides orthostatic hypotension, symptoms include overactive bladder which is now Incontinence
requiring most heavy-duty pads at least 12 per day; this is a very intrusive symptom, changes how you live your days. Also have “Heat flushes”
many episodes per day..sometimes followed by ice cold extremities. These significant “strikes” of heat cause changes of clothing, A/C
on/off . Added to needing to be near bathrooms makes travel,
Social events, etc a chore. I keep visiting to an hour. My Neurologist at Mayo started me using recumbent bike as well as
trainer at rehab facility for specific core strength & balance exercises-which do help weakened muscles in legs particularly improve—as long as I do them each day. Im now 82 and live very differently than prior to PAF. But Im an artist and still take portrait commissions-I paint sitting down of course, as standing for
more than 10mins triggers the
symptoms of feeling faint,etc
etc. Hope this helps a bit!