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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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I am sorry that I am just seeing this nearly a year after your original post.
I have Pure Autonomic Failure. You name it and I have been checked for it. The most recent was a genetic test for amyloidosis, fortunately negative.
I started having symptoms in 2010 (when I was 46) but it took a long time to get to Stanford in 2013 as I had to go through pretty much every doctor close to my home. The first test I failed spectacularly was the tilt table test. Then failed the sweat test. A couple years ago, I do the Syn-one skin biopsy test, all three samples showed PAF.
The rate of passing out now is much closer to 1-2 times a month and usually when I have urinary urgency. Sometimes this is from a crawling position as the orthostatic hypotension can be really hard.
In a day, I take 18 mg Atomextine (Strattera); 1400 mg Droxidopa (spread out over four doses); 20 mg Midodrine (spread out over three doses). If I miss a dose due to my own negligence, it becomes a very difficult day to do anything.
I do walk every day with my dogs. Sometimes this can take a while as I wait for my BP to come back up after crashing. The one exercise I can do without BP crashing is swimming. We think it is the cooler temperature that helps me. I feel pretty normal in the water, which is a great feeling.
Heat is not my friend. Hot days, hot tubs, over dressed, etc bring my BP down and I pass out more frequently.
I wish you a lot of luck. Best advice is patience with yourself (sometimes really difficult); don’t miss meds doses; drink water; get up and move any way possible; and swim.
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3 ReactionsI realized I have already posted to this about six months ago. One of the questions I saw was about was I able to work. I have been on disability for the past three years. I did work with symptoms for 12 years. But the symptoms have gotten worse and much harder to deal with. I was a Director of Finance, as the stress in the job went up, my BP would crash more and more. I knew it was time to stop working when I could feel my BP crash while sitting at my table desk
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1 Reaction@garychicago
I've had 2 or 3 episodes when I feel weak with trembles in my hands - like low blood sugar. Rspid improvement with glucose/sugar intake. There is literature explaining how autonomic dysfunction can contribute to dropping blood sugar by interfering with release of the bodies stored glucose in a time of need. Following up with PMD and neurology next month and not going for prolonged periods without sustenance.
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1 ReactionThanks. I also sweat profusely during these episodes. Have nice holidays.