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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Never Accept the Unacceptable


by K. M.
February 2006

I began fainting when I was 12; I’m 24 now. 50% of my life has been faint free, 50% hasn’t! Quite an apt figure really- is the glass half full or half empty? I’d be inclined to say half-full, though it doesn’t always feel that way.

I fainted my way through my teens, on account, the Doctors said, of heavy periods. True enough, I did faint more at the time of the month. But I always felt something else was going on too. Still, at 16, things improved and I had 3 faint free years. I moved away to St Andrews University and was having a ball.

One day in my second year I fainted in the street while out with friends. This became a frequent occurrence- I would feel the blood drain away from my face, lose my vision and crash to the floor. My GP sent me to a cardiologist who performed a tilt-test. It was horrific; I thought I would die I felt so awful. But they gave me an answer about the faints- Vasovagal Syncope: blood pressure and pulse that dropped too readily on standing. I carried on fainting occasionally, but it never stopped me from doing anything. It wasn’t malignant, they said- just annoying. I dealt with it and carried on.

Then in 2004 I got a flu virus, and began to faint on standing. It got bad, so I went home to rest for a while. I hadn’t even been on the train for an hour when I sparked out, and the other passengers said I stopped breathing and had no pulse. After I sent the paramedics away, I managed to get home and the fainting worsened. It was almost every time I stood. In the end, after the scepticism of various GPs I bought a blood pressure monitor to see for myself what was happening to me. I was sure my heart was racing, and I was proved right when my pulse jumped from 64 to 156 the first time I took a reading on standing. It was a terrible time; I snapped bones in my foot by fainting awkwardly and was covered in bruises from constantly falling.


I still had no real answers from anyone; the Cardiologists told me that it was the Vasovagal Syncope rearing its ugly head, but my pulse slowed with that, it didn’t race. I knew something else was going on, so I researched “postural tachycardia.”  Imagine my shock when I did- POTS mirrored my symptoms exactly. I went back to my GP, armed with readings and literature- and he instantly congratulated me on doing what he hadn’t been able to- finding out what was going on!

In January 2005 I was diagnosed in London with POTS. Since the flu virus, things haven’t been the same. I graduated a year late from St Andrews- but my glass remained half full- I got a first, and partied at the ball with Prince William! I have been back and forth between cardiac care units like a yoyo. As I’ve become used to it though, I am now attuned to my body and can get enough of a warning to tell people and usually prevent an injury. My pulse can be anything from 30 to 250+, and my blood pressure, they discovered in my most recent test actually flat lines, as well as see-sawing its way up to 228/170. I have to use a wheelchair on some days because I cannot stand up at all; but I only resort to it when I have no other choice.

I can’t digest wheat or lactose properly anymore; I now suffer (very occasionally) form hemiplegic migraines, where my body goes numb down one side. I have Ehlers-Danlos syndrome too, which explains the aching joints I’ve had for as long as I can remember. Having answers like this is satisfying, but it reflects one way that my glass is half empty- those diagnoses do not bring a cure, although my health seems to go in cycles. I can be fine, just like I’ve never been ill, and then crash in real style.

Personally, I think there are two responses to this kind of predicament. The first is the easiest- I could have lain in bed crying about the things I can’t do and the unfairness of it all. The second is much harder but I try to abide by it- I try never, ever to give in to the POTS, no matter what it does to me. I’m at Oxford University now, having secured an unconditional offer, studying a subject I love with some amazing academics. Life here has been a lot tougher than I ever imagined; I’ve found myself in hospital 6 times in the last 6 weeks alone; and I never know what tomorrow will bring. I’ve had classes where I’ve given presentations lying on the floor with my legs up on the table! I’ve had days where I’ve had to read for essays while lying on a hospital trolley. There are days when I can’t focus, work well, or even move. But I won’t let go of my dreams. I will complete this degree like I did my St Andrews one- well.  The POTS won’t win- I will. I may not be able to play hockey, go to the gym, or swim like I used to, but my brain sure is getting a fantastic workout!

The crux of my story is this: do not accept the unacceptable. Had I listened to doctors before I found the UK’s only autonomic specialist, I would have believed I had M.E or some other inaccurate diagnosis. You know your body better than anyone. Keep fighting for answers. And don’t ever think that POTS will stop you from living your life. It might alter when you do the things that matter; but keep pushing, and it won’t stop you from doing them. I am bigger than this condition and I refuse to let it define me. As Livy himself said, "Intelligence can leap the hurdles which nature has set before us."

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