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

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.

I 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

@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.

Thanks. I also sweat profusely during these episodes. Have nice holidays.

I have just been diagnosed with Pure Autonomic Failure and tested positive on the Syn One test. I'm very depressed about the possibility of developing Parkinson's, or MSA or Lewy Body Dementia. How are other people coping with this hanging over their heads?

@babyboxcat
I was diagnosed with Primary autonomic nervous system failure in Jan 2025 and monitoring for the development of one of the 3 neurodegenerative diseases you mentioned. It looks like early PD so far. I agree its scary and can be overwhelming at times, but learning to accept the reality and move forward is so important to maintaining quality of life. Some keys for me include the following:
1) Keep up with your fluid status (don't get dehydrated) to avoid extreme swings into low BP from orthostatic hypotension. Also, be very careful in the heat - going from a cool environment to a hot one will drop my pressure dangerously. Go slow!! If you feel lightheaded - bend over and take deep breaths and/or sit down if you can and get out of the heat. Midodrine 3 X daily helps support BP and allows me to function.
2) Be sure to follow up regularly with a neurologist who specializes in Movement Disorders to monitor your progress.
3) I take a probiotic (GI rec) daily and try to avoid foods that aggravate bloating from slow gut syndrome.
4) I also take Miralax (generic polyethylene glycol) nightly to keep gut moving - its mild and also rec by my gastroenterologist. Omeprazole helps to control the GERD related to slow gut too.
5) REM sleep behavior disorder is controlled with Clonazepam 5 mg at bedtime (rx'd by neurologist).
It's a challenge, but manageable for now. Good luck

@bmfoster
Thank you so much for your reply. I'm really trying to think positively and hope that I'll be one of the few lucky ones with PAF that doesn't go on within a few years to have one of the 3 bad diseases, but I do feel I need to be prepared. My father was diagnosed with Lewy Body Dementia, so I tend to think that that's my fate.

Thank you for the lifestyle and medication suggestions. I'm a 75 year old woman, so it's been a bit difficult for me to tell whether all of my symptoms are from PAF or from just getting old. The worst symptom I have to date is the orthostatic hypotension, but I also have GI symptoms, symptoms of REM sleep disorder and urinary incontinence (but there aren't too many 75 year old women who don't). For me, the worst part is the anxiety and depression about what the future holds.

I'd like to be seen and followed by someone in the US that is considered to be at the top of the field in synucleinopathies. From a search of the web, it seems that the Mayo Clinic is one of the few institutions that's running clinical trials on PAF. I have 3 questions: where do you go for your care, do you like the care you're being given and do you know if it matters whether a patient goes to the Mayo Clinic in Rochester or Scottsdale. Any help with picking an institution to go to would be appreciated. Thanks in advance.