Pure Autonomic Failure in this community

Does anyone else on this forum have a diagnoses of Pure Autonomic Failure?   I am new to this dx. and would like to compare observations with anyone who has had this  dx.

[evo123]

There are a couple of members of this forum with PAF, hopefully one of them will see your post and share their experiences with yourself.  

[proplus83]

Hi I do.
What would you like to know old chap?
Neel

[goregank]

i have had paf] my mother said since prolly i was born , but i was diagnosed with it at the age of 23 .

[mtgardner]

Hello!  I am so glad to get both of your replies...:)

I am newly diagnosed and have a zillion questions but will try refraining from asking them all at once so as not to overload anyone.

My BP has been all over the place and I wondered if that is typical of the beginnings of this.  The first month after diagnoses my systolic pressure varied an extreme degree from a low of 60 to190.  After a few months that settled down more and the diastolic then had large variations which really shocked me as before this on hypertensive meds (3 at one time) my BP had been stable at 120/80 for many years.  Then after about 4-6 weeks that settled down too and now my BP does vary but if I do everything right and don't bend over it hovers around lowish numbers like 107/68.  I am off all but one 20 mg. of diovan which I am sure I will be off soon enough.  

SInce my heart no longer speeds up with exercise and so my respiratory system has to take up the slack, I am of course really having to modify my activities.  I have wondered after reading reports by others with orthostatic intolerance about difficulties with airline travel due to the pressurization of cabins being pressurized to 6500 ft.  Do you have any experience with such or to traveling to destinations that are high in altitude like the´ Denver area?  I am planning a fall trip and am wondering how to prepare.  

I have potassium hovering barely above the low norm...and have had problems with potassium once before.  Does anyone know tghe physiology of why this happens and do you have to take potassium supplements?  

I will get these questions out there for whoever has input.  I will for sure ask some more later!  Thanks for answering my post...Marie

[mtgardner]

Wanted to ask too about medications.  Has anyone used pyrostigmine?