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Are there suggestions for living with pure autonmic failure (PAF)?
Brain & Nervous System | Last Active: Apr 27 2:50pm | Replies (50)Comment receiving replies
@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
Replies to "@babyboxcat I was diagnosed with Primary autonomic nervous system failure in Jan 2025 and monitoring for..."
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@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.