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

Sorry to hear about the diagnosis. I'm 68 and was diagnosed at 66. It took a while for them to figure out what was causing my symptoms. There does seem to be typical symptoms as well as more disparate symptoms and severity of the disease. My symptoms are dysautonomia, (feeling dizzy or faint upon standing from a sitting position). Lower energy, sensitivity to heat (feelings of sweating and being cold at the same time), weakness in legs going a set of stairs and then feeling light headed and out of breath. Digestion issues (I see a Neuro Gastrointestinal Dr.), and occasional bouts where I am walking and loose all energy and have to sit. I always have a protein bar with sugar in it to help if my energy is down. I do find some days better than others.

I take 18mg of Atomoxitine which is a ADHD medication used off label to help with PAF symptoms. Others use Midodrine and other medications. There are no meds specifically for PAF.

I think exercise is important and I go to a Functional Fitness trainer who works within my specific issues and really emphasizes balance. I also bicycle and never have symptoms while biking. One Dr. said it's due to sitting and the pumping action of my legs.

I also wear compression stockings which work just OK. I have ones that go up to my thighs.

You need to have a great Neurologist who specializes in Dysautonomia or is very familiar with this disease. Do you live in an area with these types of specialists? It can be hard to find these Doctors and even in Chicago there are only a couple who really work with PAF.

Thank you for your feedback, I really appreciate it. I am just looking for feedback from others that have it and I appreciate yours. Thanks again.

Thanks. That all does fit my symptoms. I also have pernicious anemia. I went to Mayo in Jacksonville and saw Dr Cheshire. Going back for tests.

Why is he thinking amylodosis?

Does PAF symptoms get worse over time?

I’m sure the Mayo has great Dr’s. Good luck on the test.

My energy has been waning over the last few months and I couldn't do as much exercise etc. I also had a couple of pretty bad episodes where I lost all energy on a walk and while biking (a first) and couldn't make it home. I was picked up by car. My Dr. prescribed Fludrocortisone several weeks ago and so far it seems to be helping with my energy. I'm on a 1/2 dose right now and it seems to help. I take it along with the Atomoxetine.
Has anyone else taken this medication for PAF?

@garychicago
I was diagnosed with Primary Autonomic Nervous System Failure Jan 2025 - primary instead of pure due to the of REM sleep behavior disorder which indicate more central brain involvement instead of pure peripheral nervous system involvement. Clonazepam has greatly improved the REM sleep dream acting out. Midodrine 2.5 mg two to three times daily greatly helped with the orthostatic hypotension after exertion or in hot weather. Miralax nightly and Senna tea (OTC) helps with gut slowdown, bloating, etc. Omeprazole helps with GERD symptoms, but was recently changed to Voquezna for better control. I know in advance to limit PO intake if I'm not going to be near a bathroom - urinary urgency is a nuisance. I exercise regularly and follow up with a Movement Disorder Specialist every 6 months. Showing some signs of progression of symptoms with difficulty in writing, slight imbalance and slowness in walking - being very careful not to fall. These symptoms suggest progression to Parkinson's or Multiple System Atrophy. Getting emotional support and trying to live one day at a time.

Everything I have read stresses the importance of exercise in treating Parkinson's disease in particular. There are some studies that have reported improved nerve communication with exercise and not just maintenance of functional status. The literature states that up to 30% of PAF patients progress to Parkinson's or atypical Parkinson's so it seems there is no downside to exercise as long as you take your meds for hypotension (Midodrine) and stay hydrated to minimize the risk of falling. I've experienced those acute spells of lower extremity weakness too - usually in the morning after climbing the steps or exerting myself briefly. Bending forward for a couple of seconds and/or sitting down for a brief period prevents passing out for me. Both my cardiologist and neurologist recommended Midodrine for hypotensive episodes, but I know Atomoxetine is an option too,

Thanks. I do walk every day, go to a Functional Fitness trainer and bicycle during better weather, when I can. I agree exercise is important. I tried Midodrine but I had a bad reaction. There just are times when I do light or moderate exercise and the have an episode of energy drain. It lasts for several hours and feels like a diabetic may feel. I don’t have low blood sugar, but need a protein bar right away. I always carry one with me.