Kira

Hi, my name is Kira and I was officially diagnosed when I was 21 after being admitted to hospital due to unrelated circumstances.

When in hospital they noticed that my heart rate was significantly higher than normal, so I was sent for a heart echo and then placed on the cardiac ward under observation.

When I was finally diagnosed my consultant discussed with me the symptoms I had been having since I was 16. It became clear that the shortness of breath, dizzy spells and other factors were not panic attacks and anxiety (this is what I had been told,) but actually PoTS!

After being admitted to hospital it took around six months of ECGs, heart echoes and a tilt table test to get a full diagnosis. Basically, from the age of 16 my PoTS was completely misdiagnosed.

PoTS has really affected my life, some days it can be really hard for me to be able to just function. I also suffer with hypermobility and a lot of joint pain, which painkillers don’t tend to help, and I battle with this every day. I also suffer with severe brain fog, resulting in me forgetting things and making it hard for me to concentrate at work. I try to not let it affect my work life but some days it gets too much, and I start having fainting episodes which can last for a short or long periods of time.

The biggest challenge for me is that PoTS is not a known condition and people don’t realise that it is a chronic illness.  I am constantly being told I am lazy and that is why I am always so tired; my PoTS isn’t even taken into consideration! Also, because my symptoms are not always visible, I am often not believed and told that I am faking it. The biggest issue is the complete unawareness of it all. 

Drinking water and having loads of salt in my diet has helped and having salt/ sugary snacks on me at all times helps too. My journey has been a massive learning process of recognising my symptoms and knowing when to sit or lie down, to relax and deep breath slowly. Even though it can be hard I tend to try and go for walks in scenic areas twice a week to help with my mental health.

I have tried Ivabradine, however the smallest amount makes me feel so much worse, increasing the severity of my symptoms.

If you have PoTS and need guidance, I recommend looking for forums and support groups. Speak to your consultant to gain a greater understating of what it is and what is happening to your body. Don’t ever think your condition is not as bad as others with PoTS, we all experience different symptoms/triggers and all have to deal with it in different ways. Just because I may not faint as often as others this does not mean that my diagnosis is any less important, we are all equally the same. I also use a mental health hotline to discuss how I feel mentally as PoTS has taken a toll on my mental health, especially when I didn’t really know much about the condition.  

If you suspect you have PoTS or know of someone else that may have it, just remember that there are so many symptoms and the condition is not just plain black and white. There is still so much more research to be done and a long way to go before people understand more about it.

My biggest hope in raising awareness of PoTS is that it becomes more understood and that people are more understanding of the people who have it before they call them lazy or fake.

We are constantly battling with ourselves every day!