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

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?

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

I have been dealing with orthostatic hypotension for 7 years. Symptoms were dizziness and difficulty breathing when I would stand. In 2009 it took a turn for the worse. I decided to go to Mayo. They determined I had an autonomic nervous system disorder. I would be interested in knowing how much your problem is like mine. I will share my experience with you also. I know of nobody else suffering with this.

Totally understand the symptoms especially the raising of a foot and feeling like you might fall. Also understand the vision bluriness congusion and memory loss. I also have extreme anxiety probably from fear of falling.

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 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

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'm finding ANS is causing the anxiety as part of the ANS not through stress. It seems to be part of the corrupted signals to and from the brain and not being able to rationalise the information correctly. On the now rare good days there is no anxiety. If I concentrate on what I'm doing and not rely on autonomical feature we have,do better. When my focus is interupted it gets me, almost like I'm not able to process multiple signals at one time.
Cheers