Fainting by Numbers - Dysautonomia Part 1

There was the time, 28 years ago, that I spent August Bank Holiday weekend in hospital instead of attending the Notting Hill Carnival in London. There was the plane journey from Gatwick to Milan where I passed out repeatedly, ( whilst sitting down !). And there was the ultimately embarrassing situation where I stopped the Milan rush hour traffic, when I slid slowly down the  tram pole I was clinging to, like a weary stripper...and woke up with an ambulance man interrogating me in Italian! There have been other times, other places and many near misses, where I have lain flat, or just got to bed in the nick of time....

The pattern with the hospital admissions has always been the same: I am taken by ambulance, and after some hours am released, exhausted but with clear round of tests and an armful of saline drip. 

Aside from the anxiety surrounding the prospect of waking up in front of strangers ( have I peed my pants...and has someone nicked my purse?) and having no idea where I am...there has always been a slight worry in my mind that there is something bigger wrong with me that has yet to be found.

Until last year,I had never heard of OI or POTS as its more commonly known variant is named. My Specialist Dr told me that essentially Dysautonomia, went with ME like bread goes with butter. You could have one without the other...but usually not.
It turns out that my habit of suddenly going, faint and shaky, and not being able to speak  or see properly( and in some cases passing out), had a name! 

And I thought I was just special! ;-)

When I returned from my stay at the hospital, I went through the hospital's report with my GP. At the same visit she needed a blood sample to test my vitamin D levels. This caused something of a problem: the needle went in but my blood was sluggish and thick to put it mildly. She asked me if I had drunk much before arriving and I confirmed I had had 5 mugs of liquid ( it was early morning..but I drink A LOT). Whilst explaining this, I also remembered the nurse in the hospital having trouble getting enough blood out for two blood tests....blood was not only thicker than water, it was apparently thicker than Bird's custard. 

And so armed with the knowledge confirmed by two doctors, I started to research what the bleep was going on.... http://www.dysautonomiainternational.org describes how the patient experiences symptoms:

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. 


The site goes on to say, that there is no cure. With over 70 million people worldwide affected, it looked, as it was, as if, once again I had ticked the box for a subscription to:

 ' Illness that is hard to explain to others, and  for which there is no cure.'

 After decades of ignorance I had questions: How can I cope with the anxiety about fainting? How can I cope better on a  hot day?  AND...
If salt is helpful- does eating a lot of bags of ready salted crisps constitute a sensible management plan...?
 ( SPOILER ALERT-sadly...NOT!)


Thank you for reading. Please leave a comment and SHARE on your favourite social media.