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

Are you in the Chicagoland area. She is at Rush Medical Center in Chicago. As I mentioned she is pretty booked, but it’s worth getting on her schedule. She is very proactive and put me with a Neuro Gasto Dr. Barrett-Englert who has been very helpful with my stomach issues.

I’m not a Dr; just a patient in a similar situation. All I can do is suggest you order and read Dr. Fargen’s book. It is written for people like us looking for answers. It will help you determine if you have IIH, a disorder that is easily missed by many good doctors. If you suspect you do after reading the book, then you know where to turn. Best of luck to you in your search. I know your pain.

Hi, I take 18mg of Atomoxetine in the morning for overall energy improvement and some help with the dysautonomia.

Have you tried compression stockings. I have gotten some medical grade stockings that go up to the top of my thigh. These help somewhat with the dysautonomia. The brand name is Jobst and I got them from a specialty pharmacy who also measured and fitted them. I too have heat intolerance and just try to stay out of the sun on hot humid days. I too get the hot and cold feeling.

It is a weird disease with disparate symptoms.

Good luck,

Thanks much for your input
and suggestions. Yes, I do have Jobst compression hose-I was told to get the pantyhose type and for summer heat, the abdominal binders. I also take Trospium Chloride capsules for incontinence-which is the bain if my existence! Ive been told it helps curb frequency but can cause teeth to decay- and I certainly dont want dental problems. I agree with your analysis of PAF-it is weird and very few people, including medical personnel, have ever heard of it.

Are you able to work or is PAF (Pure Autonomic Failure) too disabling?

Has anyone experienced progressing from Pure Autonomic Failure to Multiple Systems Atrophy?

Please Read:
For anyone experiencing Dysautonomia, Pure Autonomic Failure, or Multiple Systems Atrophy, what symptoms do you have? Does your hypertension occur very rapidly and extremely high, and often accompanied with unbearable headaches and chest and arm pain? Do you also experience supine hypertension? What are the lows and highs with your blood pressure? Mine are extreme. Have you eventually experienced involuntary whole limb jerking? What about “spells” in which you become physically frozen all over, with blank staring (no blinking), unable to speak, move, or respond to anyone. The only existing ability is to hear until the spell passes. I would like to connect with anyone that has these symptoms. It has been a 20+ year journey.

Hi, I have PAF, but have not had any of the symptoms that you describe. Mine are dysautonomia, (feeling dizzy or faint upon standing from a sitting position). Lower energy, sensitivity to heat, weakness in legs going a set of stairs and then feeling light headed. Digestion issues and occasional bouts where I am walking and loose all energy and have to sit. I think these are somewhat typical PAF issues although there seems to be more that other have.
Good luck with finding the cause of your issues.

I was just diagnosed and have the fatigue and low energy. Heat for me is terrible. Hypertension mainly but much irregular bp readings along with supine hypertension. Sometimes some brain fog.

I am looking for anyone that could help with dealing with PAF I am 66 years old and just diagnosed with it any help or advice would really be appreciated

Sorry to hear about the diagnosis. 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 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 wear compression stockings which work just OK. I have ones that go up to my thighs.

I do find some days better than others.

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.

Good luck and let me know if you have further questions.
Gary