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Are there suggestions for living with pure autonmic failure (PAF)?
For 2.5 years I have been experiencing a constellation of symptoms. I am super grateful for the opportunity to visit Mayo Clinic's Neurology Department and to do the requiste tests (sweat test and autnomic reflex screen) needed to diagnos dysautonomias. My doctor suspects that I have the rather rare pure autonomic failure but apparently there is a chance that the problem could be amylodosis. I am doing a syn-one skin biopsy test to learn more. In the meantime, I am very interested in hear from others who have PAF and to learn about symptom management. Thank you.
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What are your symptoms
@sjhalvorson Did you get your testing? Having similar problems and wanted to see how yours went.
After many years of dealing with symptoms, primarily severe orthostatic hypotension, I did the syn one biopsy test. It confirmed Pure Autonomic Failure. I do have other symptoms as well, it’s just the BP crashing many times a day that has altered my life. What symptoms are you experiencing?
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1 Reaction@marcwp I have done the syn-one and it came back normal. My Qsart showed normal in arm, but low sweat in legs and foot. I have urinary, temp regulation problems, bowel, insomnia, tremor, restless legs, stiff and sore hands, low back pain, weak legs, orthostatic hypotension at times, but I passed the Tilt Table Test. I don’t think I have PAF. Do you have postprandial hypotension where your b/p drops after eating. I have that and it’s significant. How did they know from Syn-One it was PAF? My only dx at this point is dysautonomia and idiopathic autonomic neuropathy. I am so sorry you have this, I know it limits your life unbelievably. Any words of hope for improvement by your doctor. Keep hope alive. 🙏
I have urinary, ED, weakness at times, loss of sense of smell,
lack of sweating, sometimes restless leg, difficulties at altitude, and severe orthostatic hypotension. Any autonomic function will make my BP crash (need to urinate, digesting food, getting up, walking up an incline or stairs, sudden movement like a dog on a leash bolting for a squirrel). Heat is not my friend as I abnormally sweat. The results of the Syn One were represented as a picture and it was explained to me that the patterns of the picture differentiated between PAF, Parkinson’s or Lewy Bodies Dementia.
At this point we manage the BP crashes with a combination of Droxidopa (Northera), Midodrine, Strattera and vitamin B12. For the most part I can walk the dogs. The one thing that I do really well at with no symptoms is swimming (we think it is the temp of the water)
I failed Tilt Table spectacularly (my doctor’s words, I went out in 20 seconds). Sweat test showed sweat on my left side and not right divided by a straight line down my torso and at 125° - nothing at 115°.
Good luck to you, this stuff isn’t fun.
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1 ReactionI had the Qsart sweat test. Sounds like you had the full body in a device to make you sweat with the powder. My Qsart showed normal in arm and low in legs and foot. Frankly, I still do not understand it all. Have not seen the doctor, so I’ve only been told I have autonomic neuropathy. I have terrible insomnia, daytime grogginess, sleep apnea and wake up with dreams and recall. I really have been thinking it’s MSA with the tremor and the restless legs. My life the past year has been miserable. Oddly, I had a tilt table test at Mayo in 2008 that showed orthostatic intolerance, but the Qsart and the rest of the tests were fine. I imagine what ever is going on it’s been working on me since then. I like to understand, and these medical problems seem to have few answers if any. Thanks for sharing, I’m 72 so not young onset here (unless you count the 2008 test).
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