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'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.)