Emily

Hi, my name is Emily. I’m currently a college student studying English Literature, Sociology, and Geography with the hope to go on to university and become a teacher. I have been diagnosed with PoTS for 4 years. I went from one of the highest/happiest points in my life to one of the lowest periods in my life because of PoTS. I was sitting in a maths class and I watched my pen drop from my hand and then everything went black. From that day on, I began to faint multiple times a day most days. This was ruining my high school education and giving me little hope of passing my GCSEs.

Many tests and recordings later the cardiologists were no closer to having a diagnosis until I had a tilt table test. Within a minute of the test, I was unconscious and they were unable to continue with the test.

Luckily, they had the results they needed and I was diagnosed with PoTS.

I lost confidence in my ability

Within less than a month I was put on the medication Ivabradine and Midodrine. This changed my life and brought me back to a stage where I could be a semi-normal teenager, meaning I got my GCSE results (not the best but they got me into college). I went around a year living life and enjoying it until I started becoming exhausted again and was going lightheaded doing the smallest of tasks. Then I collapsed and lost consciousness on the college bus. I was referred back to the cardiologist who couldn’t find the problem. Meanwhile, I lost confidence in my ability and my attendance at college dropped. I stopped going out with friends. After only a few hours of being awake, I needed to sleep and couldn’t stand up for longer than 10 minutes without feeling the world around me fall.  Despite this, I managed to get back on track, changed colleges, restarted the year and things were looking up.

Then in October 2018, I began having some of the worst attacks I had ever had -losing consciousness, pain, breathlessness and palpitations. Multiple ambulances and waits in A and E followed. I was then seen by a cardiologist who decided to implant a loop recorder. My attendance at college had begun to drop drastically and I had multiple days off sick from work. Around 2/3 months later I was fitted with the loop recorder and after a few weeks, I had the worst episode of collapse I’d ever had. I was in work at the time, an ambulance was called and after four days in hospital, I had the confirmed diagnosis of Postural Tachycardia Syndrome, Orthostatic Hypertension and Atrial Fibrillation. As I am already on the maximum dose of Midodrine and Ivabradine, I was told there is nothing they can do and I just have to continue my life this way.

“She faking it”

I’ve received all the comments: “it’s in your head”, “are you just skipping meals?”, “she faking it”, “she’s just drunk”, along with the looks of disgust and doubt. It’s made me nervous and worked up at the idea of collapsing in public/college/work, and the fact I’m putting upon my friends/family.

I’m determined to achieve all my goals

But I’ve made the decision that despite being down and anxious every time I step out the door, I’m no longer going to let this affect my life. This condition has taken away almost 4 years of my life and this time I’m not letting it take anymore. I’m not going to let this stop me from following my dreams, I am determined to achieve all my goals this year from the small to the large. One is to raise awareness for this condition. The more awareness, the less judgment and the stronger we can build the network within the PoTS community.