Elephant Down!- What the heck is Dysautonomia ?

Welcome back to my 'Idiots Guide to Dysautonomia'( that's me that's the idiot, not you! ) 

So how does Orthostatic Intolerance feel?
I feel really YUCKY ( to use a technical term), before, during and after. My heart beats heavier.The sudden onset of cotton wool legs feel as if they are bowing out from under me. It is all very unpleasant. Strange sensations in the abdomen, disruption to my vision ( I literally can't see straight). My body craves food, I feel dry and thirsty. I find talking difficult, thinking the words, then saying them is a struggle. After I have got to bed, I feel very ill, a sensation not unlike the high temperatures of childhood fever. I can't move, even raising my head  onto the pillow is very difficult.
It is all so sudden...and no it is not a panic attack- those feel very different. With Dysautonomia my energy is too low for panicking, or even forming cohesive thoughts. I feel as if I am slipping away....but I don't really care either way....

How do you know you have O.I?

The traditional method for diagnosis to find out what type of Dysautonomia you have,  involves a test called the Tilt Table Test. or alternatively a treadmill ( they have to be kidding on that one...), The tilt table involves being forced to stay upright until you pass out. ( again- NO! If I am going to have a flare-up of that magnitude, it had better be because I have been having a heck of a good time!) This would presumably be worth it if Doctors could agree if the condition exists...or if there was treatment that worked. Anecdotally I know that patients can be told that they are 'just anxious'  or treated by neurologists as if they are mentally ill.

Flavours of Dysautonomia include:
 POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
NCS is  'milder'  but However, some individuals have severe NCS which results in fainting several times per day....
MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson's disease, but unlike Parkinson's patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years.
Presumably I don't have MSA as I am still alive...


So, how the heck am I supposed to manage this weird condition?



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