Brooke

Hi, my name is Brooke and I was diagnosed with PoTS at the age of 23.

My symptoms began over 18 months prior to diagnosis, starting with chest pain and feeling weak and fatigued all the time.

I was continually back and forth to the GP surgery and they constantly put it down to anxiety, despite me telling them I had been through the anxiety stage before and this was completely different. In September 2023 my GP eventually took me seriously and he referred me to cardiology where I had a 24 hour monitor fitted, but unfortunately I had no symptoms on the day except a bit of fatigue and feeling weak. In November I started to feel like I was going to faint and was having visual disturbances, again, warranting more trips to my GP. At one point in January, I saw the GP once a week for 6 weeks as symptoms were at their worst and I wasn’t being taken seriously. I had also been sent to A&E 5-6 times within the 18 months prior to getting my diagnosis.

Throughout this time, as well as my symptoms getting worse, more symptoms were appearing which was extremely frightening. I then began believing that it was all in my head which I had been told on numerous occasions, with one GP also telling me I was ‘chasing a diagnosis!’ The whole time, my mental health began to take a hit making things even more difficult. Being a nurse myself, dealing with my symptoms was extremely difficult as I’m constantly on my feet and extremely busy. 

After being discharged by cardiology, without being seen as my 24 hour monitor was ok, I finally got my diagnosis through a cardiologist at work in May 2024.  I managed to eventually see a doctor who realised how my symptoms affected me on a daily basis.

I have found two main challenges, the first being allowing myself to slow down, that I don’t always need to be doing things. And the second challenge is how to explain to friends and family how I’m feeling and that some days I’m more capable than others, and on my bad days, the simplest of things are difficult.

I am currently not on medication, but I feel that I am nearing the point where it is needed. This is more difficult being from Northern Ireland and having no PoTS specialist doctors available and GPs wanting clarification from specialists prior to commencing anything. I treat my symptoms with electrolytes daily, and also increased salt and water intake. 

I am quite lucky that on my good days I am still quite active and attend the gym to weight train, but I have know my limits. I still tend to beat myself up if I plan to attend the gym and my symptoms are bad that I can’t go!

The one thing I would tell people who know nothing about PoTS, is to listen to those who experience it! No two people living with the condition are the same and we all experience things differently. 

I feel there are only a small minority of people, including medical professionals, who are aware of PoTS. My hope is that in the near future more people will become aware of how debilitating it can be, and how it impacts on those who have it, so hopefully this will eventually shorten the length of time required to get an accurate diagnosis.