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.
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I am suffering the PAF syndrome with most symptoms.
I do.
I have most of the symptoms and have had for 2 years
Hi,
ANS definitely has a mind of it's own. With so many different symptoms and combination of symptoms it is difficult to relate to them. I'm starting to appreciate the symptoms that are constant with me, as I know where I am with them. The symptoms that come and go are the more difficult ones to deal with. I have been arguing for years I'm not stressed and point out when I'm stable and in a relatively good space where is the stress, yet these are my symptoms now. Stress seems to be the answer to everything no one can figure out. For me ANS controls anxiety, BP and glucoes levels at will with the confusion, memory loss, stumbling, tirednes and irritablity randomly, even aggression with a few other symptoms to a lessor degree. The bladder, bowel and digestion I no longer have much control over. The good part is I'm not incontinent or suffer any pain with ANS. Mental anguish yes, but that is frustration of a broken health system and the lack of appresiation of ANS and what it does to me.
Cheers
Thank you for your reply. Have you been prescribed anything? I’ve gone thru Xanax and some medication that is prescribed for psychosis and neither worked. I’ve also been thru some kind of drops prescribed by a psychologist. Nothing works. So many drs so few results.
Very much still alive
Ive tried different breathing techniques. Nothing works.
Hi,
I generally react to all medications. Depression meds make me aggressive and very angry.
I use a product call "rescue" from Bach and sold world wide. It comes in several forms . I prefer the pastillies as the fluid drops I believe have alcohol in, which causes me stomach problems. Suck two until gone and it quells the anxiety to manageable levels.
I'm a firm believer of only accepting meds that are ness for life to continue. For every medication there is a side effect, can you tolerate them or not is the question. I can't and suspect that ANS has something to do with it with the meds laying in the stomach for extended time with a slow digestive system.
I have had two recent occasions when the ANS has switched off for a few hours each time. Sadly short lived and fortunately documented with my persistent stat recording each day.
Early days but on each occasion my high BP has dropped to "normal" levels, low for me! As normal levels resumed so did the ANS return. My normal BP while treated is 155/104. Seems to me that ANS is controlling my BP among other things. So the thought is that if I double the BP meds maybe, just maybe I can reproduce the ANS free time. With little known about ANS and no cure, anything is worth a try, in my opinion. My Doc agrees, although I would have increased the meds without her approval anyway.
I stick with scientifically proven meds and don't pay too much attention to anecdotal evidences. Although I have tried remedies that are more "old wives " when they seemed logical to me.
I'm with my 6th Doctor and she is proactive, from Holland. Knowing she has my back is a relief, no longer fighting the system of locally indoctrinated Dr's. who are only reactive and have their own agender's. Backed up with an invested Gastrologist specialist everything they can do they are trying. Sadly I know there is no cure or help with ANS, I suspect for me it is actually Dysautonomia not so much ANS. I have a core list of constant ANS issues but a large selection of symptoms that come and go at will, not my will! Sorting out what is permanent and what is random and how best to deal with them is my challenge.
Cheers
Yes - the ANS operates on its own and affects everything in your body. Thanks for the text!