Daisy

Growing up, I was a relatively healthy child. However, a few weeks after my fifteenth birthday, at the beginning of 2019, I fainted. We didn’t think anything of it until I started noticing other symptoms, such as stomachache, heart palpitations and dizziness. I went to the GP almost weekly for months, just to be told it was anxiety or panic attacks – one GP even told me it was normal for teenagers to faint. 

It carried on like this for most of the summer, until one night we knew I couldn’t keep going on like this. I was dizzy almost constantly when I was upright and there was still no explanation why. So, we went to an out of hours GP, who fortunately thought more investigation was needed and sent me for blood tests, suspecting I had low iron or anaemia. He also recommended going gluten-free, which dramatically improved my symptoms almost overnight. All my blood work came back normal and a few days later I went back to school to start year 11. I was still experiencing symptoms daily, which made it difficult to stand in the lunch queue, participate in PE, or stand for periods of time. I regularly had to leave lessons due to feeling unwell, however, teachers didn’t believe me and sent me back to lessons to participate, even in sports. I continued to struggle at school for five months. During this time, I felt isolated and like I was wasting everyone’s time, however hard I tried to forget about it, my symptoms were still there. 

In January 2020, after being completely worn out, I contracted glandular fever. By the time I had recovered in February, my symptoms worsened to the point I could barely walk or sit up for any length of time, I was also constantly out of breath unless I was lying down and noticed blood pooling often. During this time, the paramedics were called and they completed a variety of tests which included an ECG, both lying down and standing, showing a heart rate of over 170 when upright which finally raised some concern. A referral to a paediatrician was made, but unfortunately, Covid-19 had hit, which meant appointments with the paediatrician were over the phone. This made the situation more difficult as they were unable to do a tilt table test to confirm my diagnosis. They suspected pots and diagnosed me with this, which was a relief as people could no longer tell me it was psychosomatic! 

I started to research PoTS

Fortunately, schools had closed by this time and education had moved online, it was a relief to have the space and time to accept and acknowledge the diagnosis. I started to research PoTS and learnt ways to manage my symptoms. I was prescribed medication but felt this wasn’t right for me. I started by increasing my salt and water intake, doing gentle yoga, going on short walks and making diet changes. I have also recently been diagnosed with breathing pattern disorder, which can be common in PoTS patients – breathing exercises have been helping this. 

Unfortunately, I am still out of education but hope to start college in September. However, if I could give anyone advice for being in college or school with PoTS, I would say to make everyone around you aware of your condition. Tell them how it affects you, so that a plan of support can be made. School/college should feel like a safe place where you are able to achieve. Always have a drink and a salty snack ready, and don’t be afraid or embarrassed to ask for help! 

Almost 2 years on since my first PoTS symptom, I’m in a much better place both mentally and physically. I’m doing leg and core exercises and walking up to 10,000 steps on good days. I’m a lot more in tune with my body than I use to be, and have learnt the importance of nutrition, exercise and stress management. I’m hopeful for the future and believe you can still have a successful future with PoTS. Together we can spread more awareness.