Hi there, just wanted to share a few thoughts with you all in case it may be of help/benefit to anyone - title of this comes from POTS syndrome, some form of which I am suffering from, and potty - in the UK at least- is a colloquial term for being crazy !!! pretty ironical really, since my personal experience over the last few years is that doctors have been a lot keener on the potty/crazy diagnosis than on the POTS one. And no wonder - a website on this subject - one of the cover all terms is Orthostatic Incompetence or OI - says that half a million Americans have some form or other of it, which strikes me as a pretty sizeable minority, but if you're unlucky enough to have it - there seems to be lots of sub types, but basically they all come down to a failure of your automatic body systems, homeostasis its called, and when we are well, we don't notice them at all, why would we, but sick, we do notice - because we can't neccessarily do the following things at any given moment - like :
STAND UP WITHOUT GETTING DIZZY/FAINTING
STAND STILL FOR MORE THAN A MINUTE OR TWO
SIT STILL ON JOURNEYS OF MORE THAN HALF AN HOUR
MAINTAIN NORMAL HEART RATE
TAKE VIGOROUS EXERCISE
- so life becomes a bit of a problem, to say the least. I was lucky enough to have a life where I was pretty much ok before this came on, but since it did I have been amazed by the difficulty of getting a diagnosis. I have imagined I had just about everything from MS to kidney failure over the last 5/6 years. I don't know what's worse - having a complaint that involves all the above, and at its worst leaves you paralysed on the floor with tachycardia, - or encountering an apparent total ignorance on the part of doctors that it even exists, leading inevitably to the denial diagnosis - anxiety/stress/crazy person syndrome.
My form of this complaint seems to be vascular - my circulation just doesn't work properly any more - and unfortunately I also carry a genetic condition for allergy, so my circulation being very poor in my legs, and my producing too much histamine means I have intense itching/eczema to contend with as well, so I can and do get pretty bad with it all.
What I find so weird is the almost universal blank on this subject with doctors - they genuinely do seem to know nothing about it - yet its actually fully described in the medical literature under the heading of autonomic failure, in fact, at emergency level its really frequent, being something that often happens to patients after car crashes, serious trauma injuries etc. - this is my point really, they want to get their act together and recognise that for whatever reason, people are presenting at surgeries without having been involved in car crashes but with symptoms of dysautonomia - it's serious, it's pure murder to live with, and the consensus on both sides of the Atlantic seems to be either -
it's imagination - or, if the patient is persistent enough or desperate enough to push on for a diagnosis - they will diagnose POTS or OI or whatever, and then ..... nothing ! Yep, folks, that's right, the standard treatment for dysatonomia in 2008 is - nothing.
Well, I believe there are drugs but they had such a disastrous effect that nothing is the preferred form of treatment now. Water and salt are what keep me going. One amazing fellow sufferer has gone in for GI trousers - she has a website explaining all. I wonder if other people out there have similar experiences/ thoughts to share,
Hoping for a better tomorrow, hang in there.
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