Sophie

My name is Sophie and I’m 26 years old.

My PoTs symptoms started 8 years ago. When I was 18 years, I went to sleep one night and woke suddenly feeling very unwell. As symptoms worsened, we noticed I needed medical attention. The GP came for an out of hours visit and said I needed oxygen so I was transferred to hospital for further treatment. Within a few hours I was discharged and sent home.

Things not improving

Over the space of a few years, I experienced many episodes of symptoms including heart palpitations, headaches, chest pain, breathlessness, vomiting and many other symptoms. Over the few years I had many visits to my local accident and emergency department.

Testing

When I was in my early 20’s, I contacted my GP who made the decision to refer me for further testing. I underwent an ECG, 24-hour tape test and 24-hour urine collection but all of my tests came back in normal range apart from my heart rate which was situated in the 100s. At that time, they diagnosed me with Sinus Tachycardia and I was given Beta Blocker as treatment, I was told on many occasions it was likely age or anxiety related and I was discharged from cardiology.

An answer at last

A few years passed and I was still experiencing symptoms. I returned to my GP again after many accident and emergency visits and was referred to a specialist unit. On the day of my appointment, they knew with my heart rate and standing from sitting blood pressure that I was meeting the criteria for PoTS. Unfortunately they cannot do a tilt table test and my symptoms are too bad to stop my beta blockers. To take me off treatment would cause more harm than good. 

Grieving the person I once was

Although I am glad to finally have an explanation that makes sense rather than being told it was age or anxiety, I very much struggle and grieve the person I once was before PoTS. It has changed my life a lot. Things that are small to the average person are now a daily struggle. I have just recently been diagnosed so I’m still working on acceptance and making life changes.If I had advice for anyone who has PoTS, it would be to know you’re not alone, never just accept that it’s age or anxiety if you find yourself in a similar situation, push for testing and support and trust you know yourself best. I will be starting to share my PoTS experience over social media platforms to gain more awareness.