POTS
This page contains stories of STARS members with Postural Tacycardia Syndrome (POTS).
Jodie & Buddy's story
My story is about a treatment for POTS, a very special treatment. A labradoodle called Buddy.
Ella's story
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!
Liam's story
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”.
Kristina's story
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.
Taras Story
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.
Lorna's Story
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.
James and Matthews Story
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.
Clare's Story
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.
Kathy's Story
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!
Anita's Story
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.
Kirsty's Story
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.
Kellie's Story
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.