Courtney

My name is Courtney, I’m 25 and I was recently diagnosed with PoTS in mid-august 2023. After a 17 year struggle. If I told the whole story you’d be reading for weeks! So I will keep it as short as I can.

It all started when I was 7 years old randomly, while sat playing with some dolls I felt a funny feeling in my chest and then my heart started to beat very fast I went to tell my mum, by then it was beating so hard and fast you could see it pounding through my T-shirt. An ambulance was sent straight away, even the paramedics were in shock. They rushed me straight to resus as my Heart Rate was way over 200bpm. I was surrounded by so many nurses and doctors trying their best to slow my heart rate down and figure out what was happening. After a few hours and some medication through a canula my heart rate slowed down and I was sent to a children’s ward for monitoring  for a few days. After a few days I was sent home and nothing more was said. A few weeks later the same happened again and then again and again. All the same problem and the same process each time, except they said these were episodes of SVT (superventricular tachycardia). By the time I was 8 I was referred to child cardiologist for an echocardiogram and a 24 hour monitor.

 From here was the start of a very long journey.

After 17 years of ambulance calls for rapid, uncontrollable heart rates, A&E trips, hospital stays, hospital appointments, GP appointments, x4 at home heart monitoring, x2 echocardiograms, endless amounts of medical gaslighting,  diagnostic overshadowing, and lots of tears I finally received an answer. After an arrhythmia specialist referred me to have a tilt table test, despite him being 100% certain I didn’t have PoTS. The tests came back positive and revealed I do in fact have it.

I’m currently 5 months in with this diagnosis and I’m still learning so much. Each day can be tough, it’s true when you hear “one minute you can feel absolutely fine and in a second it can all change”. I’m still trying to understand my body and know my limits, but it can be such a struggle when I’m now developing new symptoms which I never had before.

In September 2023 I randomly collapsed on my bathroom floor, my heart rate was high, I was super clammy, I was nauseous, I lost all feeling in my hands and arms and my mum said my hands where turning inward as if I was about to have a seizure. My hands went blue, my speech was slurred and so much more. That’s what my mum had told me as I couldn’t remember anything other than losing the ability to hear for that period of time, loosing feeling in my hands and arms, having chest pain and a pounding sensation before being on the floor.

I now experience low heart rates of 40bpm, or my heart going in and out of funny rhythms which give me unpleasant symptoms too. I experience arm and leg pain, numbness and weakness which can make it difficult to walk and do normal things like open bottles or even hold a phone. I get some horrible symptoms with my stomach which I feel get worse each day but I have suffered with a bad stomach since I was younger also. I can’t quite believe how much more symptoms I experience these days the list goes on. But I’m so grateful I have some understanding of what’s going on.

I absolutely love to bake, I used to make birthday cakes for family and friends and document my achievements on social media. Unfortunately I don’t do it as often now because it’s such a struggle but every now and again when my body allows me to, I will rustle up a sweet treat in the kitchen.

 I still have a bit of a road ahead of me as my GP has referred me back to cardiology as she has some concerns. But I’m remaining positive, I’m learning to use my voice, speak up more during appointments and try not to be scared when approaching medical professionals due to horrible experiences in the past.

I hope this helps you to know you aren’t alone, for so long I felt alone I still do sometimes but there is such an amazing community of strong individuals dealing with the same thing and you are all incredible.