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

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

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?

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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.

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@viehweger

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.

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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.

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@viehweger

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.

Jump to this post

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

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@happymom101

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.

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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.

Liked by Lisa Lucier

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@viehweger

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.

Jump to this post

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.)

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