Tara's 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.
I planned to visit my GP, but the night before my appointment my skin felt as though it was on fire and my heart rate rocketed to 230bpm. After dashing to A&E it became clear that the doctors had no clue what was happening to me. They believed that it could be SVT but were concerned that they couldn’t lower my heart rate with drugs to treat it.
I spent the course of 3 months in hospital completely bed ridden, suffering with pain, severe heat intolerance, facial burning ,migraines, nausea, dizziness and fainting. As soon as I tried to move or sit up my heart rate would jump to over 200bpm within seconds and my blood pressure would drop dramatically when I attempted to stand. But no scans, blood tests, xrays or heart echoes showed anything abnormal except an irregular white blood cell count. The doctors put my symptoms down to a virus or infection and sent me home on beta blockers with the hope my life would return to normal.
When I collapsed during an attempt to return to work, a local doctor told me that it was anxiety related and put me onto anti-depressant tablets.... with the side effect of a fast heart rate! I was back in hospital within 24 hours. Thankfully my symptoms were ‘googled’ and they found the possibility of a diagnosis of POTS which was confirmed by a tilt table test in London under the care of a top cardiologist.
He recommended that I tried a new medicine called Ivabradine to control my heart rate and, within weeks, I could finally stand and move around a little. It took me around 18 months to find Professor Mathias, my POTS specialist, and get an appointment but it was definitely worth the wait. Within months I was diagnosed with EDS and had received full autonomic testing which proved that, even on medication, my heart rate was still erratic. I have stuck with Ivabradine, my ‘miracle’ drug which helps me to function day-to-day. Combined with a mixture of anti-inflammatory, pain and anti-nausea medications it helps me to cope with the array of problems that I get each day. Whilst I know that heat intolerance is often a common symptom with POTS, mine is so severe that it completely restricts my life. I cannot bear ‘normal’ temperatures and have to cope with fans, ice packs and air conditioning at home - but attempting to do normal things such as sitting and having a drink in a pub can prove impossible. I have tried medications but nothing has worked yet and so it means I have to keep my fingers crossed for now. Some things are slowly improving. Thanks to physiotherapy, I can now be on my feet for longer during good spells and I have managed to study English from home and next year I will (hopefully!) get my degree. Over 120 medical appointments have caused major disruption to my life and that of my family (especially as I have to be accompanied to most appointments). There is still a very long way to go and more research is desperately needed in order to improve patients lives, but with better awareness this could soon be achievable.
Please consider donating to the Just Giving site that was highlighted in Issue 32 of STARS
newsletter and which is specifically for raising POTS awareness and research.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.
http://www.justgiving.com/POTSresearch.