Rebecca

My name is Rebecca, and I am 34 years old. I have had symptoms of PoTS since I was a child however, I didn’t realise what it was at the time.

During childhood, my family thought I was exaggerating how I felt most of the time…..

I was prone to nearly passing out after standing for long periods of time and my face would flush terribly after any strong emotion. My symptoms then worsened following a car accident at age 14, and surgery which left me bed-bound for three weeks. After being under general anaesthetic, I used to almost pass out whenever I tried to sit up. I also had further complications post-surgery in the form of unknown infections and reactions, possibly due to undiagnosed Mast Cell Activation Syndrome, which is often associated with PoTS, requiring me to rely on a wheelchair for some time.

I managed to get through university and begin a full-time job; however, I continued to struggle with extreme fatigue and dizziness. As my degree was in a biological science, I decided to do my own research into my condition where I found that I was likely suffering from PoTS due to my symptoms and potentially Ehlers Danlos Syndrome. I was lucky in the sense that I was able to move forwards and receive testing, such as a 24-hour ECG and Echocardiogram, which proved that I was experiencing a higher heart rate upon posture changes and ectopic beats, but my heart was clear. However, the doctors were uninterested as to why I had PoTS after ruling out some other conditions such as Marfan Syndrome.

Following diagnosis, I was initially prescribed beta blockers which helped my PoTS symptoms but unfortunately exasperated my Raynaud’s Syndrome. I then trialled Ivabradine, but I again didn’t react well to it due to feeling as if my heart rate was constantly battling against the effect of the medication causing chest pain. Ultimately, I stopped the medication and went on to have a family. Pregnancy actually reduced my symptoms for a couple of years however, they are now returning, and I try to control them through increasing my salt intake and fluids.

I was fortunate to not encounter too many problems with my GP and other medical professionals, but I am still apprehensive about going back to them with my returning and worsening symptoms. I worry that they will say I am imagining it or not believe me when I talk about how much my symptoms can vary with severity. I have seen first-hand the battle with healthcare if you don’t have a common diagnosis with having my son also tested for various conditions and not being believed. Most of the time, I found that the GP would be searching on Google as lots of lesser-known conditions aren’t on their system which is why my initial referral may have been better due to doing this research myself. PoTS is lot more recognised now that it was when I was going through the process of a diagnosis, but I do still have multiple doctors asking me what it is when I mention it!