Clara
My name is Clara, I am 22 years old and I live in Belgium.
My PoTS symptoms first appeared in 2017. It all started with chest discomfort, dizziness, palpitations when changing position and at rest, extrasystoles and constant presyncope.
The nights were just as complicated, I often had to stay seated because my heart was racing so much and the palpitations kept me constantly awake.
I started consulting lots of different doctors who could not find what I was suffering from and who, for a long time, blamed it on stress or treated me for things that I didn’t have. There is very little consideration, especially when you are a young woman with an “invisible” illness, from of a large number of doctors!
After over two and a half years, during which the symptoms worsened as I was less and less able to stand up and was almost unable to speak because of the palpitations, an internist finally diagnosed me with PoTS.
Prior to this, the impact on my life was huge, I was in high school at that time and I had to stop to be home schooled but even that was too much for me given my condition. As for my private life, I lived the illness in a very private way for a really long time as most people didn’t understand and my tolerance to their remarks, derogatory comments and lack of consideration was relatively low. It is very difficult to have a social life when we live in a society where movement is at the centre of everything and, when this movement becomes impossible and practically nothing is put in place, we are very quickly sidelined!
Over time I tried all possible drug treatments (beta blockers like Bisoprolol, Procoralan (Ivabradine), Fludrocortisone, Gutron (Midodrine),…) but unfortunately, none of them were effective or improved my condition and quality of life.
Fortunately in March 2023, I met a very competent, reassuring and very human doctor! In July 2023, I successfully underwent a new procedure in Brussels which has allowed me to breathe again. I no longer take medications or have palpitations, and that, regardless of the position, I am able to do sport every day (I had to undergo cardiac rehabilitation with a physiotherapist too) and my nights are perfect because my heart no longer keeps me awake with the palpitations. Some other symptoms of my illness still give me a little trouble but the doctor says that with time I will get better. I definitely feel stronger and stronger each day.
There are far too many cardiologists who do not know about PoTS or who do not know how to deal with it properly, so it is of the upmost importance to better educate about the syndrome in universities and congresses. There needs be humanity and a real dialogue between doctors and patients too, and a comprehensive list of doctors competent enough to manage patients with PoTS. Doctors should be able to put patients in contact with one another so no-one is alone navigating this debilitating illness…
It’s so difficult to give advice when it comes to an illness but keep in mind you have to trust yourself, it’s your body and always do what you need, put yourself first and do not feel guilty about it. Remember that there are no good or bad ways to experience an illness and that there are no good or bad choices, school does not teach us how to manage these things, everyone does their best.
My wish is that my story gives a bit of hope to people with our illness. After all, there is always hope!