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

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

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.

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?

Has anyone suffered from this? I'm 49 years old and I've had it for a few years now. I faint off and on from my low blood pressure. There is no pattern to it. My teanage children are scarred from it. I feel so alone...just wandering if anyone knows what i'm going through.

I had fallen twice in one year after quickly standing and both time they required ER visits and stitches. The last time it required 12 staples in my head plus I suffered a concussion. Have you seen a doctor about this? I was referred to a cardiologist to rule out heart problems. After ruling out any cardiac reasons he duplicated the conditions (drop in blood pressure when quickly going from reclining to standing) in his office. He observed that my blood pressure became "thready". I was diagnosed with orthostatic hypotension. His advice was to up my sodium intake for my hypotension, and always sit up a minute before standing. Before walking away he said to be sure there is no light-headedness. He also said that there is a medication called flurinef acetate that could be prescribed if it begins to occur more often. (I was familiar with the medication because I had a dog with Addison's Disease that required it twice a day.) Like you there is no pattern to this with me and it has actually been something that I have dealt with my entire life. Since the issue is a random occurring event it is very hard to pinpoint when or if it will happen. If you haven't already done so, consult with a your PCP and see if you need to be referred to a specialist. He/she can then advise you from there as to what the underlying cause is.

Hello @happymom101,

Welcome to Connect; we're happy to have you join our community. I moved your message to this existing discussion about pure autonomic failure (PAF), so that you can meet @kavenagi @adelaide @jbenn1010 @virginialutherhilman @isurvivealone @msfrank04; I sincerely hope they will return to share their experiences and insights with you.

@that_girl, thank you for sharing your story, and for the mention of orthostatic hypotension; @happymom101, what explanation have your doctors given for your symptoms? How do you manage the low blood pressure?

I was diagnosed with PAF at the Mayo Clinic in 2016 although I first started experiencing Orthostatic Hypotension (OH) in 2012. Current issues and how I am trying to manage them:

Orthostatic hypotension - midodrine in the morning, head elevation at night, small glass of white wine an hour before bedtime (lowers BP);
Heat - once it gets to 75 degrees and humid I have a hard time. Tired;
Sweat - limited to my chest and back;
Erections - no luck here, but I use Trimix injections and they work really well. Only problem is the two hour duration;
Climbing hills or stairs - immediate crash of BP and tiredness.
Dreams - scary, yelling and REM disorder.

My question to the group - has anyone had a issue with altitude, either on planes or in high locations like Denver, CO? All input welcome.

Have ANS failure (amongst many other neurological issues) and wanted to address my experience with airline travel and altitude for you. I’m rarely given clearance to travel but with absolute certainty I have major edema issues with air travel. My BP plummets as well and my limbs swell 2x-3x, causing obvious pain but consciousness problems. As far as altitude, I have recently moved from virtually no elevation (52 feet above sea level) to over 1,100+ & have actually experienced some relief in comparison. The lack of humidity is my hypothesis but it’s not completely clear. I still have major issues but the climate seems to be one positive thing.

Hello @viehweger and welcome to Mayo Connect

I appreciate your posting about PAF and OH. It sounds as if these disorders impact many facets of your life, including your sleep. I found some research information about this from Mayo's website. Here is the link, https://mayoclinic.pure.elsevier.com/en/publications/pure-autonomic-failure-predictors-of-conversion-to-clinical-cns-i.

I am glad to see that @menville has posted some information about her experiences with air travel.

If you are comfortable sharing more, I was wondering how long ago you began to experience these symptoms and how your medical team arrived at this diagnosis.

I would like to invite @kavenagi to join in this conversation as many of your symptoms seem to be the same as theirs.

I hope that in the near future more of our Members will post to you in the meantime, I look forward to hearing from you again.

Teresa

Yes, I DO know what you go through, with the low blood pressure. Does this occur when you've been standing in one spot (such as in the kitchen when you're cooking) for a while? Is it worse when you're in the heat and sun and when you're exerting? If so, you need to ask your dr. to order a Tilt Table Test. That can determine if you have Orthostatic Hypotension (OH) -- a drop in BP of more than 20 points when standing). If the test is positive, you need to consume more sodium (contrary to what most people are advised to do) and try to avoid standing for long periods or working or exercising out in the sun and heat. Sitting down will counteract the problem, so wherever I go, I'm always on the lookout for a place I can sit, especially if it's a situation where most people are standing, such as a wedding reception, party, etc. I take a 1000 mg sodium tablet (over the counter in the pharmacy) three times weekly. Compression stockings are sometimes recommended, but I didn't find that they did much good. Medication can be prescribed by the doctor IF (and it's a big IF) you don't also have supine hypertension (SH), where your BP goes up when you lie down (such as overnight). About half the people who have OH also have SH. You would NOT want to take the medication for low BP if you also have the SH. I used to be stressed out about all the "weird things" that were going on with me, but now that I've found out about the condition (Pure Autonomic Failure), I understand it and know the lifestyle measures to try to cope with it, so that I'm not really stressed any more. Write back if you'd like to hear more about my experiences and what I've learned. This is not a common thing, and even doctors don't know that much about it. Some medical people have never even heard of it. It used to be called the Bradbury/Eggleston Syndrome, and some medical people might've heard of that.