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Mar 13, 2012 · Is there anyone else out there with pure autonomic system failure? in Brain & Nervous System

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

Mar 13, 2012 · Is there anyone else out there with pure autonomic system failure? in Brain & Nervous System

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.

Mar 12, 2012 · Is there anyone else out there with pure autonomic system failure? in Brain & Nervous System

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

Mar 3, 2012 · Is there anyone else out there with pure autonomic system failure? in Brain & Nervous System

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

Nov 4, 2011 · Is there anyone else out there with pure autonomic system failure? in Brain & Nervous System

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