STARS Patient Information
This page contains stories of STARS members with Postural Tachycardia Syndrome (PoTS).
I was given a tilt table test. I almost passed out during the test and was given a positive diagnosis of neurocardiogenic syncope.
I had my first faint at 17 getting out of the bath, I felt my heart flutter at what felt liked 200bpm, I became dizzy, sick and slowly my hearing and vision became a blur.
My journey started in 2012 aged 17. I was working on Saturdays as a shop assistant in a bedding shop often lifting heavy items.
Despite suffering from frequent faints and dizzy spells, Jane, 68, has driven her energy into helping raise awareness of her condition.
I faint; it’s a thing. It first happened nearly five years ago. I was taking a shower when I started to feel a bit "wobbly". Suddenly I had the rather alarming realisation I was about to faint and, before I knew it, I had passed out. Coming round a few seconds later, I concluded that perhaps taking a skin-blisteringly hot shower after not eating for a day because of a stomach bug wasn’t as good an idea as I had originally thought and forgot all about it. Until I fainted again three months later...
This year, I was diagnosed with postural orthostatic tachycardia syndrome (PoTS), following twenty years of illness. In 1993, aged 17, I developed recurrent fainting and other debilitating symptoms following a bout of chicken pox. Despite my dominant symptoms not matching those of classic M.E, I was diagnosed with M.E six months after the symptoms began.
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.
Regularly I would have an ‘episode’ where I felt as I was about to pass out, but I did not. Instead I had all the before mentioned symptoms, impaired vision, severe shaking, sweating. Basically my whole body would go into a total ‘red alert’, for no apparent reason.
I was 15 when I first started fainting. The first time was at a concert. Every time I stood up I fainted again until I finally had to get carried out. I visited my GP the next day but he said it was heat exhaustion, as it was so crowded at the concert, and that it was nothing to worry about.
I suffer with a condition called neurocardiogenic syncope and also POTS (Postural Orthostatic Tachycardia Syndrome).
My story is about a treatment for POTS, a very special treatment. A labradoodle called Buddy.
Our 'POTSie' story began March, 2010, when our 15 year old daughter Ella, the youngest of our four children, came home from a school trip to Prague fainting. We had no idea just how our lives were about to change and how adept we were all to become at the recovery position!
After Education, I set up my own business as a self-employed photographer back in 2007 and have been working as an outdoor photographer since. I would easily carry my kit for miles a day whilst summiting high ground with an overall ascent of thousands of feet per day. Even an average day in the office would generally end with a minimum of a 2 mile walk in my local countryside. Everything about my life could be summed up with one word “outdoors”.
I developed POTS within pregnancy of my youngest child. I went from being fairly active and fit, to barely being able to climb the stairs or walk out to my greenhouse almost overnight.
Until November 2006 I had never had any health problems. I was working part time in a school and studying for a degree as well as enjoying an active social life. Over the course of a fortnight I began to suffer from dizzy spells, followed by nausea and an extreme sensation that my skin was burning and that it was always too hot. I put it down to a possible virus or bug and tried to continue as normal, but my life deteriorated as I found I couldn’t pursue my normal activities of shopping or going out with friends.
I have always been an active person, enjoying all types of outdoor activities such as hill walking, biking, skiing – generally anything that gets me outside.
Both, James and Matthew have POTS, James diagnosed and Matthew treated for but not formally diagnosed. They are currently under an Adolescent Specialist at UCLH. James will be 18 in January and he has requested to be referred to Professor Mathias in London. Our GP is particularly supportive and has been very understanding writing letters for examination dispensation and giving the boys sound advice on how to help themselves. The medication they continue to take is a beta-blocker and an isotonic fluid, daily, as prescribed in July 2008. Luckily for them this combination has alleviated the worst of their symptoms. Their quality of life has greatly improved, although, they are both still learning to pace themselves and listen to their bodies.
When you suffer from POTS or any other fainting disorder, the decision to try for a baby is not straight forward. I faint at least a few times a week, I am too ill to work, I had to give up my driving licence because of my fainting and I use a wheelchair outside the home because I can only walk a few yards. My husband, Simon, and I had a lot of questions and worries about how on earth I would be able to cope with looking after a baby when I can only just look after myself. We waited a few years in the hope that my health would improve but it didn't. Eventually I became so depressed at the prospect of a life without children that Simon and I decided to start trying anyway.
Living with an uncommon heart rhythm disorder - Inappropriate Sinus Tachycardia. Up until February 2007 I considered myself a normal working person, no major health issues, nothing that had debilitated my life to this degree. I acquired this uncommon heart rhythm problem following a bout of chest pain …I have always had a fast heart rate in my younger years but nothing to concern me as I had to work hard to get my heart rate up just like any other normal person. I suffered blackouts in my teens but never knew why and seemed to grow out of them by the age of sixteen. I had a normal life, worked, married, raised a family but, looking back, I wonder if the blackouts could have something to do with what has happened to me now!
My problems with pre-syncope spells began 13 years ago when I was 16. I had multiple dizzy spells when standing up the kind that most people have had at some point in their lives, maybe when standing up from a hot bath. Everything closes in and goes black and blurry. The GP put it down to hormones and being a teenager. The spells became more frequent and caused me to collapse to the floor, though I never lost consciousness. I was referred to a neurologist who also dismissed it as the result of being a young female.
When my POTS started in 2005, I was on a school skiing trip in France. There were initial signs that may have suggested something wasn't right within me, but I thought it was just a reoccurrence of the glandular fever I had had the year before. I was very emotional and could hardly eat.
Life was pretty good for my daughter Kellie in 2005. She was happy at boarding school with plenty of friends, doing very well academically (on an academic scholarship) and enjoying her new love of rowing. Then, out of the blue, she started collapsing for no apparent reason. This was the beginning of a roller coaster ride into the unknown.