Are there suggestions for living with pure autonmic failure (PAF)?

I am glad that the bicycle helps. I have tried a stationary recumbent bike and it was ok for me. I don’t recall feeling bad, I do remember getting up could be challenging with BP crashing. My BP crashes on a regular stationary bike.

I don’t have any activity that I sweat in any big way. I will get a bit damp on my back driving on a warm day, but that’s about it.

The one thing that I do, and have done since I was in school, is to stand with my legs crossed at my thighs. If I try to stand normal with feet apart, my BP will drop or crash.

Yes, I did have the sweat test with the powder. It was surreal.

I am fairly certain I have been dealing with this to a degree most of my life.

I really started noticing an increase of symptoms when I was 46 (I am now 61). But it wasn’t until I was 48 that I passed out for the first time. It still took a year to get to Stanford Neurology.

The amount of medicine I take has increased over the years. I do get concerned about how much I take and at what point do I max out.

I hope you find relief soon.

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

I failed the tilt table test. I also have orthostatic hypotension and the doctor thinks I have trigeminal neuralgia. I haven't received the results yet for my syn-one test. I'm able to walk my dogs for a couple of miles each day. I'm good as long as I keep moving during the day. As soon as I quit for the day my symptoms crash. I know what you mean about Chicago weather, I am from the region. I'm going to Mayo in September. I've been going to the University of Chicago for all my tests.

Good luck at The Mayo. I was at NorthShore but I’m at Rush now.

How do you like Rush?

Where is Dr. Kincaid located out of? I just got diagnosed with PAF and I’m looking for some help dealing with this. Any help would be very appreciative thank you to all that respond.

Have you tried going in with Dr. Fargen in North Carolina? I believe he does this very surgery. He has a book for patients on Amazon. Search under his name, Kyle M. Fargen. He is well respected for his work in this field (Idiopathic Intercranial Hypertension). Good luck.

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!