Jenna

I was diagnosed with PoTS about 2 months ago. It is not something I have really opened up about since my diagnosis, but I feel like now is the right time and hopefully, my story can help someone else! I started getting symptoms 2 years prior to my diagnosis. At the time, there was so much confusion around what was wrong with me – no one could find a diagnosis, but I knew something was not right.

I had to be very persistent at the doctor’s because the constant fainting spells, breathlessness and palpitations were getting worse. Luckily, I was able to see a consultant and this finally led me to some answers.

My first episode started at work when I worked at a pub. I would come home from a 12-hour shift and be in pain. I would have a high heart rate, dizziness, fatigue, headaches, brain fog, shaking, sweating and heart palpitations and the pain would be unbearable.  

In September 2019, I began my first year of college where I spent 5 months complaining of palpitations, headaches, dizziness, high heart rate, and sweating. I finally gave in and sought some advice from 111 when I presented a heart rate of 160 at rest. I made my way to the hospital by ambulance, where I had an ECG and was monitored for hours then finally sent home. 

I started to collapse

As my episodes got worse and became more frequent, I started to collapse more regularly in different situations, such as at college or on the train home.  

Over the last 2 years, my episodes worsened and continued for longer periods of time, which have frequently led me to being taken to hospital by ambulance. 

I had many ECGs, Holter monitors, and other tests but they were confused as nothing was found. My situation was given to a cardiologist who did not seem to understand what was going on and I was sent away with beta-blockers – personally, none of these worked for me!   

Not knowing what was going on had a massive impact on me and my social life and made me very anxious about going out. College was extremely difficult, and I was too fatigued and brain fogged to manage any work. I could not get out of bed to get to college and I missed so many lessons. I felt cheated, extremely unwell, and I could not accept that I had something wrong with me but did not know what it was. Like everyone else, I had dreams. I was too stubborn to give in, and with the support of my family, teachers, and friends I managed to continue and finish my college courses. 

Finally diagnosed

After 2 years of doctors telling me that ‘I was fine’ and that ‘it was just acid reflux’, they finally diagnosed me with PoTS, 2 months ago.  

I am happy that now I know what I have, so I can start treating it correctly. I have recently just started medication and I am at the beginning of my diagnosis journey. I still experience symptoms and episodes daily but moving forward I can now try medication and lifestyle changes to try and combat PoTS.  

I’ve no idea what to expect when it comes to my health as every day is different but it proves that anything is possible with PoTS. 

I am now 18 and I know that PoTS is not easy to live with. It has left me as a very different person and having to take medication daily. The mental side of it is difficult, and some days you can be left thinking, ‘why me?.’ PoTS affects everyone differently, and what one person can do, another cannot, but it does not mean the end of possibilities.