Vicki

Since being a teenager I always was aware of my super fast heart, but wasn’t diagnosed officially till the age of 28. When I was in my teens and early 20’s, I could never understand why I was so tired from physical activity. I would come back from walking my dogs and need to desperately sit down and elevate my legs whereas everybody else could just carry on with another activity.

I vividly remember being on holiday and everyone else could climb Vesuvius really easily and I felt close to collapse, yet I was the youngest of the group. I started to think I was just really unfit so started to try to exercise at home. Everyone would describe the high after exercise but I would just feel so ill and shaky afterwards. A symptom I now know is common in PoTS is exercise intolerance. 

In March 2019, I developed sepsis. Whilst in hospital they noticed my tachycardia, and I had my first of many ECGs.  Once I had recovered from my infection, I continued to suffer with my heartrate but even more extreme. I had got a Fitbit just before Christmas and this would show my heart in fat burn and in tachycardia just sitting down eating my dinner! 

I was in and out of hospital being sent by my GP who was at a loose end. Then in June 2019 my heart was that fast I was sent into resus and had my heart reset with adenosine which was terrifying. The doctors thought I had gone into SVT. After that I was referred to a cardiologist who suggested PoTS as well, however surprisingly, despite all my hospital admissions I wasn’t given any long term treatment.  

The doctor suspected PoTS

In April 2021 when I was admitted as an inpatient into a different hospital, I was referred to a cardiology ward, and kept as an inpatient for nearly 2 weeks. There, the doctor suspected PoTS again and referred me for a 4th tilt test, I was finally given an official diagnosis.  

I’m still getting to grips with it all, I still suffer with SVT, IST, hypertension and issues with my vessels and structural issues with my heart, which can make managing my PoTs more complex.  

It is all very much ongoing as I was recently blue lighted in an ambulance and had to have my heart reset again and spent time in CCU. The cardiologists have now referred me to an electrophysiologist who is trialling various medication for me. I currently take Bisoprolol and Ivabradine to hopefully keep me out of hospital. 

When I went back to my GP he openly admitted he had never heard of it, so it’s great when people share their stories to raise awareness. I also think being open to your employer, friends and family is the best thing, as then people won’t just think your being lazy when you need to sit down and recover from an activity.