Share this:

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

Posted by @virginialutherhilman in Brain & Nervous System, Nov 4, 2011

I have lots of orthostatic hypotension but also underlying hypertension. Just would like to compare notes as to how others cope.


Posted by @isurvivealone, Mar 2, 2012

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.


Posted by @virginialutherhilman, Mar 3, 2012

I am delighted to receive your reply. I would like to compare our disorder and learn how you are coping with it. I am 80 years old and had such a time getting any kind of diagnosis until Mayo's put the blood pressure cuff on and had me record what I was doing at the time. I won't go in to too much detail this message. Please send me your questions. Thanks


Posted by @virginialutherhilman, Mar 12, 2012

It is hard to explain my condition. When I standd up my blood pressure starts going down, get light headed, get tunnel vision and things get grey so I cannot see then twice I have blacked out. When I hit the floor it jolts me back. I am very careful to get down in a chair or on the floor with legs in air to avoid this from happening. I take Florinef and 4 salt pills a day to keep bp up. There are other effects such as dry eye, irritable explosive bowel, do not sleep well and take med for depression. I have bad days when avout all I do is remain in recliner except for bathroom breaks. I have underlying hypertension so sleep in adjustable bed withhead elevated and head of bed up on jacks. I got diagnosed in about 2003. In test at Mayo,s I did not sweat normally. Would appreciate hearing from you. Thanks


Posted by @isurvivealone, Mar 12, 2012

Sorry I've been slow in responding. I have quite an extensive history of other illness. While they are serious by themselves, I could still be ambulatory and somewhat functional if it weren't for the hypotension when I stand. My BP drops up to 50 pts and my diaphragm closes and I can't breathe. Mayo diagnosed an autonomic neurological disfunction that causes my problem. I hope they are able to get more answers for you.


Posted by @virginialutherhilman, Mar 13, 2012

I have pretty much learned how to cope with my situation. I am now in an assisted living facility. I also wear 30-40 pantyhose which seem to help. My left heart valve has decided to leak now too. Are you wheelchair bound? I am ambulatory and just keep rollator with seat on it whenever I go very far so can get seated if feel it going too far down. Tke care. Tell me more. Thanks


Posted by @msfrank04, Mar 12, 2012

I have fainted 4 times in the last 5 years and have not been the same since my second spell. I have been dizzy everyday since my second spell 4 1/2 years ago. The cardiologist diagnosed me with neurally mediated syncope. The dizzyness has gotten better over time, but can still affect my day to day life. I am considering an appointment at the Mayo Clinic because my current doctors say there is nothing they can do to help the dizzyness.


Posted by @virginialutherhilman, Mar 13, 2012

Ihave a lot of faith in Mayo's. They see so many more patients they may be able to offer some help. It would be worth a try. Good luck and let me know how you come out.


Posted by @jbenn1010, Oct 16, 2012

I've had this condition for 15 years, only diagnosed about 2 years ago after Tilt table test. Symptoms are much worse in the morning, with blood pressure in the 60 over 40 range. Also have supine hypertension so it's hard to treat the low for raising the high. Wish I knew some magic answers. Also have diarrhea 3 -4 times in the morning after breakfast. I just signed up for this discussion group so hope there are others who can talk about the conditions affect on them.


Posted by @adelaide, Oct 12, 2012

Interested in talking with other women who are coping with Pure Autonomic Failure (PAF). I am a retired registered nurse educator. How are others coping with problems such as the supine hypertension? Are others heat sensitive?


Posted by @kavenagi, Mar 24, 2016

Orthostatic hypetension,bladder problems and sexual dysfunction


Posted by @kavenagi, Mar 24, 2016

I have been diagnosed three years ago with this rare degenerative disease and I am really stressed and depressed for the symptoms like nocturia,erectile and ejaculatory failure.I am 49 years old and the symptoms of this pure autonomic failure(PAF) do not let me enjoy life with my family.I am wondering if someone has this to share and help me cope


Posted by @colleenyoung, Mar 24, 2016

Welcome to Connect @kavenagi.
I moved your message to an existing thread about pure autonomic failure (PAF). It hasn't been active for quite some time, but I'm hoping your message will re-animate the discussion.

@adelaide @jbenn1010 @virginialutherhilman and @isurvivealone: It would be great to hear from you again and if you could share your managing PAF experiences with new member @kavenagi.


Posted by @kavenagi, Mar 25, 2016

Thank you for reply to my comment for this nasty thing call Pure autonomic failure,it seems that I can deal with orthostatic hypotension by eating salty food and drink pletty of fluids,the most problem is that I can't have an erection and if I do with Viagra is impossible to ejaculate or have an orgasm.I thing in my country Cyprus I am the only one with PAF.Does anybody experience any sexual problems like me?

Please login or become a member to post a comment.