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

Posted by virginialutherhilman @virginialutherhilman, Nov 4, 2011

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

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phstanton | @phstanton | Aug 29, 2018
In reply to @viehweger "I was diagnosed with PAF at the Mayo Clinic in 2016 although I first started experiencing..." + (show)
@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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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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KCar | @kcarmack99 | Jan 7 5:38pm

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.

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kathiweaver | @kathiweaver | Mar 15 8:52pm
In reply to @adelaide "Interested in talking with other women who are coping with Pure Autonomic Failure (PAF). I am..." + (show)
@adelaide

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?

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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

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