Summer
My name is Summer and I am 28 years old. It has been almost 1 year since my PoTS
felt as though it arrived overnight.
I had a pre-syncope on my way to work which led to tightness in my chest, orthostatic intolerance and extreme heart palpitations. I called 111 who booked me in for a hospital appointment the next morning.
After numerous tests, the doctors diagnosed me with dehydration. I was happy to have such an easy diagnosis to fix. However, I was quickly bedbound and drinking 2-3 litres of water a day was not enough. Weeks passed. I saw a private doctor who tested me for hyperthyroidism. The results were negative and he believed I had suffered from a virus despite having no cold or flu symptoms prior.
I had to quit my job as a nursery teacher which I loved and ended up moving out of London in order to focus on my recovery. I went back to the doctors in September for a check up and after listening to my heart he told me to go straight to hospital. After more testing the head doctor came around and asked me if I had heard of PoTS. Which I vaguely had. He gave me tips on what to do when I felt faint (which were useful) and also recommended eating another bag of crisps a day (which wasn’t so helpful). They booked me in for a tilt table test in the new year.
During this waiting period I made quick progress. I was walking my dog again, found another job and even made it to Disneyland Paris which I still can’t believe I survived. Sadly, December brought a pre-syncope which sent me all the way back to the start. I was housebound again. Doing 800 steps a day.
In February this year, the day after my tilt table test — where I only lasted 30 seconds — I was diagnosed with PoTS. I am now taking Ivabradine which is helping a lot as well as working with a PoTS coach. I am now in a much better place and am building on my foundations. These include sufficient water intake, high sodium electrolytes, small high protein meals and consistent movement. All of these things have contributed to me having a lot less flare ups and set backs.
I am doing 6-7k steps, have a part time job, have started exercising again and have even had some long days out on my feet which have been a blessing. This journey has been, and definitely is, tough and I am still grieving who I used to be. But I am still hopeful for my future and excited to get back to travelling, longer dog walks and simply feeling a little bit more like me. If you have recently been diagnosed, please have hope because slowly but surely things can and will get better.