Is there anyone else out there with pure autonomic system failure?

Yes, I've had all the symptoms you mention here, other than erection problems (I'm female) and REM disorder. And yes, I've also had problems with high altitudes, which I noticed years ago when skiing in CO. I had no idea at that time that I had PAF, but it's progressed to the point where I have symptoms that can't be ignored. The orthostatic hypotension (OH) aspect was determined with a Tilt Table Test, and I confirmed the supine hypertension (SH) myself by taking my BP upon arising in the mornings. About half the people who have OH also have SH. I also have chronically low electrolytes and some digestive issues. I have done online research on PAF (abstracts/articles from clinical journals) and learned a LOT, which has been a boon to me and explains the many seemingly random maladies I've had over many years. One of my more recent online discoveries is that "altitude intolerance" IS one of the symptoms of PAF, and Raynaud's Syndrome (which I've had for years) is thought by some researchers to possibly be, as well. I've learned to avoid heat and sun if at all possible (big trouble), and I take three 1000mg sodium tabs a week. It also helps a little to cross your legs and contract your leg and abdominal muscles if you're forced to stand in a line or are in a situation, such as party, where there aren't many chairs available. The best option is always to sit down before the BP drops too much. Exertion, heat, and eating large meals all make the BP drop more quickly. As for the supine hypertension (elevated BP), I sleep on a 12 degree wedge and 3 pillows, but still have BP in the 160s - 170s upon arising. I love to hike and work outdoors, but I know my limits -- and don't do it if it's really hot, humid, and sunny. I also try to avoid too many inclines when hiking. (I can hike up to 3 miles before symptoms kick in -- if it's shady and cool.)

Is this discussion still active? I was diagnosed with PAF at Mayo in Feb 2022 and would love to connect with others sharing the disorder.

Hi I have PAF & am a retired RN. Saline IVs at home help me. They say we often have low circulating blood volume.
It's frustrating for sure

I’m 80 yr old woman with PAF,
Pure Autonomic Failure, diagnosed 2 yrs ago by Mayo. If this is a current topic on Mayo Connect, I’d be very glad to compare notes on symptoms & coping. But at this point my first
need is this: No one knows what this neuro-degenerative disease is and it’s frustrating and tiring to explain, except to say my blood pressure plummets to 60/40s when I stand from sitting- or remain standing for more than 20mins. I’d appreciate hearing how others cope with explaining
this Nervous System Autonomic
Disorder. THANKS

I’ve never heard of this & am very interested. My Dad’s B/P used to do that & we assumed it was heart failure. The dr tried a drug used for a disorder calked Myasthenia Gravis, but my Dad did not like the side effects.

Hi,
I was diagnosed with Autonomic polyneuropathy after 12 years of every other diagnosis going. I can't say it is "pure" but it sure is invasive. It has a firm grip of my bladder, bowels digestion and blood pressure. I have numerous other symptoms and am lucky with no pain most of the time. My pain tolerance is rather high so it wouldn't be particularly noticed by me. All the other symptoms have a mind of their own hanging around to zap me when I least expect it. The trend seems to be following my BP readings, when they are high and they usually are, I'm not in for a very happy day. Very occasionally my BP drops to normal levels and I'm a youngster again for the few hours before the BP starts to rise again. My worst episode was paralysis from the waist down with nothing I could move until is subsided minutes latter. Fortunately rare although being left standing unable to control movement was a strange feeling. I have periods when I'm trying to relax that I feel like the body has been turned off which can last from 1 to 2 hours of as time. Sort of like a camera being turned off then back on and nothing has changed, the body doesn't relax, it stays frozen yet time has elapsed. On a particularly bad day I get blurry eyes, confusion, memory loss, loss of dexterity and vertigo combined with the inability to raise my feet to step properly, I stumble around. I generally shuffle around until I'm released from this living death or just sit down and wait out the bad patches, which can be all day. My symptoms are progressing and now take over most of my days. As far as I know the message from the brain to whichever part of the body is required to do something is being corrupted, some get through and some make no sense to the respective organs/muscles at all, while others are scrambled giving only partial response. Knowing it can take my life in a heartbeat without warning isn't a wonderful contemplation, but it is the reality of Autonomic polyneuropathy.
Cheers

silverwolf, Hi,
I think you’re referring to a medication called Pyridostigimine
(used to treat Myasthenia Gravis by strengthening muscles). This is
same med prescribed to treat my
PAF, by bulking up the volume of blood. The brand name is Mestinon. Ive had to increase the
dosage a few times - and guess ive been lucky to not have side effects,
as your Father did. While main
symptom of PAF is Orthostatic Hypotension with blood pressure
dropping very sharply when I go from sitting to standing, causing weakness & possible fall, there are other lifestyle-changing symptoms with PAF-bladder problems ( in my case incontinence, constipation,
abnormal sweating or lack thereof,
etc. i also have REM Sleep Behavior Disorder (RBD) causing me to “act out” mostly violent nightmares which have led to
bolting off the bed with injury to myself. Fortunately these frightening events are now infrequent but still unpredictable.
There's a lot of helpful information on PAF from Mayo Clinic, etc. despite fact that its mostly unheard of - even by doctors.

I have vasomotor autonomic disorder. it affects my coronary system. Ive spent the last 5 years, with them trying to control my blood pressure. they would say you must not be taking your meds correctly or you are eating to much salt, or whatever elst they could think of as the excuse. well recently they finally diagnosed me, and took me off all my bp meds, and Im allowed to take clonodine IF my bp gets over 200 systolic. reason being my bp drops really low if Im at a normal bp. Ive passed out. Recently I had a tia stroke . very minor. they determined it was from blood pressure dropping to low for to long, and the brain called for more blood. In er, my systolic pressure hit 260. They have sent in a referal to mayo, and Im just waiting to hear from them. my blood pressure normally runs 265/ to 150/ now. accept those times when it decides to drop to low, wich for the last few days its been running under 100 most of the time. Its awful. causes me to stumble a lot.

I’m going to Mayo in Rochester the end of august and MAY be diagnosed with this. My question is- are you a type 1 diabetic? I have been for 62 years.

Hello @jeangreer, Welcome to Connect. I'm not sure @phstanton is still following Connect and may not respond. I did a search on PAF and thought you might find it helpful to scan through the results to see other discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=PAF.

Have you been seen at Rochester Mayo before?