STARS Patient Information
I started fainting sporadically at the age of 12 and my GP put the episodes down to me being a tall, young, vegetarian female with low blood pressure. This was not a particularly satisfactory or helpful diagnosis as it did not explain why this was happening specifically to me and not to others who fit the same profile as I do.
This continued for a few years and passing out now and again wasn't a huge inconvenience, and was even somewhat of a comedy feature amongst my friends and family - having passed out on top of a mountain, into a cupboard, flowerbed, suitcase etc., I was building up quite a repertoire of locations. However, last year, it became rather more serious and sinister for me when I started to pass out without any warning whatsoever. For example, I would find myself at the bottom of the stairs having fallen from the top, or waking up in the shower not knowing how long I'd been there.
Still having no diagnosis and being no closer to identifying the causes behind my episodes, my mum researched my symptoms further and luckily came across STARS and we were put in touch with my wonderful cardiologist at the Oxford John Radcliffe hospital. I underwent several arrhythmia tests and scans, all of which showed no abnormalities. It was only the signs of tachycardia from the 24 hour heart monitor tape and the positive tilt-table test that made it apparent I was suffering from POTS. I did not respond well to medication often prescribed to POTS sufferers – beta-blockers and fludrocortisone. If anything, these drugs had a detrimental effect on my health, increasing the frequency and length of my episodes.
For me, what has really worked has been three key lifestyle changes. The first, being the consumption of 2-3 litres of water per day. The second, being cardiovascular exercise and weight training, to strengthen the muscles in the lower half of my body. The third, was adding a little extra salt to every meal. These were recommended by my cardiologist and the technician who performed my tilt-table test. I could see improvements in my health within the first few weeks of following this regime.
My condition is now much more under control and manageable. Whilst I still have the occasional episode, it only happens whilst standing up for a long time and I now receive a warning, which enables me to call out for help before I pass out. I think it is really important to inform other PoTS sufferers that if medication does not work there are alternatives which are definitely worth trying, as they are far less intrusive and have fewer or no side effects.
Clearly there have been periods, over the past year especially, where I felt I would have to completely alter my life plans to accommodate this illness. Without a doubt family, friends and my tutors at University College, Oxford, gave me the support and encouragement to overcome this and stay positive. I am pleased to say I have refused to let this illness hinder me from achieving what I want in life.
This year I have started writing for a legal column in a newspaper, taught myself how to speak and write basic conversational German, learnt to play the piano, and have pursued my love of fashion by becoming a model too. I am currently training to cycle 25km to raise money for Stars, for my 22nd birthday in March, and am looking forward to graduating with a degree in law from Oxford University this summer.
We can beat PoTS with PoTS - Positivity, Open-mindedness, Tenacity and of course, a Sense of humour.