Charlotte

I was diagnosed with PoTS about 6 years ago. It’s not something I’ve really opened up about since my diagnosis, but I feel like now is the right time and hopefully, my story can help someone else! For many years before my diagnosis, there was so much confusion around what was wrong with me – no one could find a diagnosis, but I knew something wasn’t right. I had to be very persistent at the doctors because the constant fainting spells and breathlessness were getting worse. Luckily, I was able to see a consultant privately and this finally led me to some answers.

The first incident happened when I was attending a bridesmaid fitting. I stood up on the podium to have my dress fitted and the next thing I remember I had collapsed. Straight away my mum asked me ‘had I eaten enough that day?’ and ‘had I been drinking enough water?’, the normal questions you would ask if this happened to someone. I knew I had and was so confused why this has happened. About a week later after I’d been at the gym, I came home and had a hot shower, got dressed, and the next thing I woke up on my bedroom floor and my entire body was shaking. At this point I was really frightened and confused – I had no idea what happened and how I got there. I called my mum to come upstairs and explained what had happened. Over time I started to notice that sometimes I couldn’t walk from the station in London to my work office without starting to feel like I was going to collapse. I could no longer run on the treadmill without this strange sensation in my heart, almost straining and dizziness.

I passed out during the test multiple times

Finally, after numerous visits to the doctors, I was referred to see Dr. Gall. He instantly booked me in for a tilt table test. I passed out during the test multiple times, couldn’t feel my legs, my heart rate was through the roof and slowly all the sensations that had been happening to me were happening all over again one after the other. I continued to have more tests, exercise tests, ECGs, a heart monitor for a week and was eventually given a medication trial in London and the go-ahead to start taking Midodrine daily. I started on a lower dose but unfortunately had to increase this because the episodes continued. I now have medication 3 times a day and also have the option to take a tablet to help regulate my heart rate. The heart rate was an important factor for me as it really started to affect my everyday life. To me, it felt like I was running a marathon (150 bpm) but was in fact just trying to watch the TV or sit in a meeting at work. Now I feel like my symptoms are more under control and I can finally resume a normal-ish life!

I haven’t let it control me or stop me achieving my goals

I still have episodes, but they are no longer weekly. It was only the other day I was out walking with my partner and started to collapse, luckily, he’s very aware of when this starts to happen and is amazing at helping me. I always carry a salty snack with me just in case because this tends to make me feel slightly better. I also have a pressure/heart monitor machine at home to monitor myself regularly. Of course, some things have changed as a result of this. I struggle with certain exercises, my body just won’t allow me to do them. I know when I have to sit down and put my legs in the air to try and bring the blood back to my head. I get very nervous If I know I’m going somewhere where I have to stand for long periods of time. I was also diagnosed with endometriosis around the same time and I feel the 2 together can really increase my fatigue and almost double the symptoms.

Ultimately, I’ve learned to push through this and live life the best that I can!

I can definitely say since my diagnosis and with the right daily medication, I’ve had to make some changes to my lifestyle, but I haven’t let it control me or stop me from achieving my goals.