Sophia

It all started one random Sunday afternoon just after my 17th birthday. I was sitting there one minute and next minute waking up on the floor confused, pain all over my body, scared. No one had any idea what had just happened.

The first time it happened mum phoned an ambulance, they did my obs  (heart rate, blood pressure etc…) and by the time they got there everything was “normal” so it was put down to a one off. I was given the choice to go to hospital or contact the GP and make them aware of what had happened the next day.

I started to think “yes my symptoms match to PoTS”.

A few weeks passed and things seemed fine, but more and more symptoms started appearing. High heart rate, presyncope, headaches, very tired, fainting and a lot more. It definitely was proving it wasn’t a one off. At the time I was doing air cadets which involved a lot of standing (that led to  lots of fainting!). It was my GP who first mentioned it could be PoTS and that’s what got me doing more research on what it was. I started to think “yes my symptoms match to PoTS”.

I’ve had many hours spent in ambulances, hospital corridors, resus, waiting rooms and side rooms as tests likeECG’s, bloods, blood pressure etc were done only to be told “it’s all normal”, “you’re fine”, “you’re faking it” “it’s all in your head”.Although I never believed the people that said I was faking it or making it up, I knew something was wrong. I got referred to cardiology who got me a 7-day holter monitor, echocardiogram and bloods.

I officially got diagnosed in December 2022 after a scary faint when I was alone at a train station. I  ended up being taken to hospital and admitted for a week. My heart rate was continuously monitored and I was put on fluids. People started to believe me and realised something wasn’t right and eventually they started to do the correct tests. I was fainting most of the time I was standing up and very tired. They did an Active stand test whilst I was there and it showed I had PoTS.

I’ll always remember being told I had PoTS by the cardiologist on ward round. I felt relieved as I knew it was an answer and I could hopefully find medication to help and start to understand my symptoms more. I already knew it was PoTS but felt happy to have this confirmed by a medical professional and  felt listened to.

It’s nice to have people to connect with

Since being diagnosed I have started on ivabradine that definitely helps with managing my heart rate. I’m now becoming a pro and learning how to manage my every day symptoms and learning what to do to prevent fainting and flare ups. Things like drinking plenty of fluid, electrolytes and making people aware if I’m feeling unwell. Something I’m not amazing at is listening to my  body/not over doing it and resting when I need to! I’ve also found connections with other people who have PoTS through social media and it’s nice to have people to connect with and relate to about flare ups, appointments and everything else that comes with a chronic illness/PoTS.