Serena
Hi – I’m Serena, I’m 22 years old. I believe I’ve had PoTS for most of my life or at least from the age of 7 years old. It took at least 13 years to start being investigated for PoTS and 2 years of investigations to be diagnosed.
I fainted for the first time when I was 7 years old. I would then faint every couple of years since with episodes of near fainting and other symptoms too. It was put down to different reasons or health professionals just didn’t know why. I would have the same symptoms every time! I didn’t go to the doctors properly about it until I was 19, when I mentioned that I would have dizzy episodes and my heart felt funny. This led to the diagnosis of tachycardia and palpitations when I was 20 and I was discharged. However, I was still unwell and knew something wasn’t right.
A lightbulb moment!
I went to A&E and a doctor mentioned PoTS and it was like a light switched on. The symptoms matched! So I was re-referred to cardiology who listened to me and referred me to Dr Fulton who specialises in PoTS and who diagnosed me.
Relief in getting diagnosed
It may sound odd but it was a big relief when I was diagnosed. I was told all of my symptoms; my panic attacks (that turned out to be tachycardia and palpitations), my stomach problems etc. were all in my head. That they were psychological. That because they couldn’t physically find anything wrong with me that I didn’t need further help because there was nothing that could be done.
Struggles
It isn’t easy. Some days I struggle to shower, to get out of bed. I struggle to be independent, to go places that aren’t within walking distance of my home due to fear of having symptoms. But I now have more good days than bad now I’m on midodrine!
Things that help
The biggest relief was finding medical professionals who believed me, took me seriously and helped me get the diagnosis. This really helped me because now I know what is happening with my body. Other things that have helped are exercise, specifically weight training (I had low exercise tolerance, it took months to build up!), improved diet and increasing my salt and fluid intake.
Be your own advocate
It has taught me many things; listen to your body. Use your voice to speak up when you know something isn’t right. As a person of colour (mixed Caribbean), this can be a barrier to being heard. Be your own advocate! If you can’t, ask a family member or friend! Thank you for reading my story, I hope this has helped someone!