Jessica

My name is Jessica, I’m 23 years old, and I remember PoTS symptoms started to appear 10 years ago.

I was an energetic and sporty child, however at around age 13 I started to feel tired and sluggish whenever I played sports and exercised.

I lost my interest in sport, but I didn’t really think much of it. During a PE class, we were asked to take our resting pulse rates. The teacher asked us to put our hands up as she called out 60bpm, 70, then 80. Mine was 100bpm. I was confused and worried, so I lied and said mine was 80. I felt sad and believed that I was lazy and unfit.

Worsening symptoms

My symptoms got worse gradually through my teens and became unbearable when I started university. I felt constantly faint, hot and prickly when I was standing, especially in warmer weather and when I was stood in one place for a long time. I was extremely tired and I felt like I wasn’t breathing right. I often forgot what people said to me and experienced brain fog, which I dismissed as being forgetful and stupid. I had previously been diagnosed with generalised anxiety, so a lot of the symptoms overlapped, but I knew there was something wrong. Even when I felt mentally well my heart was racing as soon as I got out of bed. I felt ill in class, travelling on public transport was my worst nightmare, and I had to leave social events early.

4 years of appointments…

I was desperate to know what was wrong, so I went to the doctors in 2017. What followed was four years of appointments, EGCs, echocardiograms, trying medication, my symptoms worsening, a few fainting episodes, and feeling extremely alone. Finally, I was diagnosed with PoTS in November 2021 after a tilt table test. I felt sad that I had a chronic illness, but I also felt overwhelmingly relieved that this wasn’t all in my head.

Learning to manage my symptoms

Since my diagnosis, I have been able to research how to manage my symptoms. I drink plenty of water during the day, I have increased my salt intake and I know my limits. On top of full time work in an office, I play bass in a band. Being a musician with PoTS can be challenging as gigs are high energy and there is lots of standing and moving involved. I am usually very tired after a gig, but I am learning to pace myself, sit down at regular intervals and stay hydrated while having fun and performing, so I don’t completely burn out.

Keep pushing for answers

My symptoms are still the same and I have really bad days, but I have better days too. I punished myself for so long, so now I’m learning to be kind to myself. My advice to anyone reading this who suspects that they have PoTS is to keep pushing for answers, prioritise your needs and reach out for support from the people you love; this won’t get rid of your illness but it will lighten the load.