— PleaseOfferMeASeat (@BlueTube2016) August 28, 2018
Last October I was diagnosed with a form of Dysautonomia called Neurally Mitigated Syncope. It’s also called Autonomically Mitigated Syncope, Vasovagal Syncope and Reflex Syncope, just to make things complicated, but all four terms refer to the same condition. I had thought that I might have POTS, which is common with EDS, but some of the specifics of POTS didn’t seem to match what I was experiencing, but the syncope makes so much sense.
I’ve been feeling dizzy quite a lot of the time, and my GP referred me to a neurologist, who scheduled me for a tilt table test. The wait for the appointment was about 8 months, but I’m used to long waiting lists now. I’m glad I live in London, as this is the centre I’d have been sent to wherever I was in the country.
My tilt test was quite early in the morning, and having planned ahead, I actually arrived before the technician did. When everything was ready, she called me in and explained how everything would happen. We talked about my symptoms and when they happen, and she answered all my questions.
I had to lie down on a bed and was strapped to various bits of equipment. There was an ECG, a blood pressure machine and something to measure my breathing. While I was lying down, I had to do various tests to put me under stress to see what my reaction was.
First up, I had to squeeze a rubber ball. This was meant to be for 3 minutes but I could only manage 2 before my hand became too painful. I then had to do various different types of breathing, and have some bloods taken. Then came mental maths- counting backwards in 7s from 300, which is more challenging than you think when you’re under pressure. Finally, I had to have an ice pack on my hand for a few minutes.
Then it was time for the tilt part of the tilt test. I was able to rest for a couple of minutes after the other tests first, and the blood pressure monitor was reattached. Because it was so heavy it had subluxed my wrist and my fingers had changed colour, but I was able to click it back into place. I also stretched my legs a bit as my knees were complaining after lying flat for so long.
Being tilted up was definitely the worst bit. I had to stay like that as long as I could, and the technician had various things they needed to try to get me to faint. For me, it was taking blood. I could feel myself going, and I was tilted back down.
After I’d settled and was able to sit up, I ate some of the snacks I’d brought with me. It was a really unpleasant experience but I knew that going in, so I was prepared to just do my best with everything that was thrown at me so that there would be good results for the consultant to look at. I was fitted with a 24h blood pressure monitor and given some tasks to carry out with it before bringing it back the next day.
About a month later I saw the consultant again, and she explained what had been going on as well as suggesting some things to help combat it. She said that people like me rarely actually faint because we’re so good at mitigating it- sitting down or crouching to make sure that we don’t keel over. She explained a couple of extra measures I can take like wearing flight socks, and making sure I eat plenty of salt. I now carry a little pot of salt with me to add to food when I’m out and about.
Now, I’m waiting on a group session for other people with syncope, to help us understand how to live with the condition. There aren’t really any pharmacological solutions, so it’s all about lifestyle and doing things to make sure you don’t faint.