Caroline: PoTS a decade on
Like so many other POTS diagnosed people I have read about, I was always an extremely healthy child and teenager. I can almost pinpoint the day when this started to change – 10 years ago, when I turned 18.
On my 18th birthday I developed severe tonsillitis for the first time in my life, which led to a severe case of glandular fever during my first term of university. I was hospitalised just before Christmas that year and the dreaded tonsils were then removed. I have read that POTS can sometimes develop after a bad virus, and I think that this was definitely was the case for me.
Over the course of my early twenties, I finished my degree, completed a postgraduate diploma and settled in Cardiff to begin my career in the Arts. I felt very well and healthy, bar experiencing occasional fatigue and palpitations. These palpitations started to gradually increase, but test after test showed recurring anaemia and as palpitations are symptomatic of this, that seemed to be the answer. Eventually, the fatigue worsened and alongside palpitations I was experiencing flushing and hot sweats. A routine ECG showed a very high resting heart rate (144bpm) and I was immediately sent to the nearest A&E. There followed chest X Rays, a heart scan, a 24 hour ECG and urine test – all of which came back relatively normal. But in my heart (!), I knew that something was amiss.
Fast forward a year and all the symptoms had intensified, plus some more. I was referred to a cardiologist who assured me that he would get to the bottom of things, and true to his word, he did. An exercise ECG showed a very reactive heart rate to small movements, and finally a tilt table test in May this year diagnosed my POTS. In fact, it only took 2 minutes of being tilted to show clearly what was wrong! I am now taking Ivabradine and am on a high salt and fluid diet.
As everyone with POTS will know, there is no easy cure and I think that I may need to try a variety of treatment methods to find what works for me. Is it easy having POTS? Most definitely not. But I count myself very lucky that I am able to work full time, volunteer in my spare time, and still have an active and busy social life. I don’t suffer from syncope (just on occasions pre-syncope), so I am able to still drive and not worry about this side of the condition.
Of course there are frustrations. I enjoy sport and exercising, but finding the energy to go swimming or to an aerobics class defeats me more often than not. On really bad days when my head is pounding and my heart is racing I don’t really feel like doing anything or even getting out of bed, but I think it is important not to give into the condition and to instead try and make adaptations to make it easier to handle day to day. I am fortunate to have an inspirational boyfriend and a fantastic network of family and friends who support me and I just hope that over time, more research is able to be carried out around this rather mysterious condition and progress made as to treatment options and maybe even a cure.