Katherine

Hi, my name is Katherine and I have PoTS. I first started experiencing symptoms (fatigue, tachycardia, dizzy spells and nausea etc.) in January 2015 and was admitted to hospital due to their severity. I was studying for a master’s degree at the time and was reluctant to take time off as I was told that I just had a viral infection and I would get better in three weeks. I did not get better. My condition deteriorated to the point where I could no longer get out of bed. I could not read, write or speak coherently either.

I took time off from my course, which was only supposed to be for 6 months. Unfortunately, due to long NHS waiting times and being referred to the wrong specialist, I had to ask for extensions on my medical leave, until my university could no longer hold my place anymore. I was devastated when I lost my place on my master’s degree due to a ‘mystery illness’ as I’d worked very hard to obtain a place on the course and was getting good grades. I even wanted to stay on to do a PhD.

Diagnosis was not the end of my struggles

In 2016, I managed to see a cardiologist, but he did not have a PoTS speciality and I had to wait a few more months to see a PoTS specialist. In September 2016 I was diagnosed with PoTS after a positive tilt table test. However, my diagnosis was not the end of my struggles. The medication (Fludrocortisone and Ivabradine) I was prescribed initially did not alleviate my symptoms. Fludrocortisone just caused me more problems than it was helping, and I had to be referred to more specialists because of them. I was swapped to Midodrine in October 2017, but I had a severe allergic reaction to it straight away. Changes to my diet and starting a graded exercise programme did not reduce my symptoms either. In February 2018, I started IV fluids at my request and my symptoms were alleviated almost instantly. This is not a treatment that is commonly offered on the NHS, but I am grateful to have been given the opportunity to try it. My case of PoTS is very severe, and my quality of life was greatly diminished because of it.

It is now 2019, I am a full-time student again. I still have PoTS, but my symptoms are being managed with regular IV fluids and Ivabradine. I also work part time and do extra-curricular activities and charity work. I have my own blog where I share lifestyle tips for living with chronic illness and I use social media to raise awareness of PoTS with the hope that I can prevent someone else going through the heartache that I did at the start of my illness.

It is possible to live a full life with PoTS

You just have to find a suitable doctor to help you achieve it. Educate yourself about PoTS and all the possible treatment options. PoTS UK is a great resource and a good place to start.