Gabby, 24

My name is Gabby, I’m 24 and I have PoTS.I was first diagnosed with PoTS in 2018. For many years I had bouts of dizziness. At the time, I was also diagnosed with an anxiety disorder so my symptoms were put down to that. Over the years I went to the doctors a few times only to be told I was young and skinny and I would grow out of it.

I was never able to queue for very long in shops and wherever I went, I would be on alert for places I could sit down if I felt dizzy. I was always hungry and would have to eat every couple of hours.

At the start of 2018, I was having my hair cut at home. At one point I had to stand for a few minutes and I suddenly became extremely dizzy. I walked into the kitchen where I blacked out. I woke up on the floor with a cut to my chin where I had hit my face on the kitchen worktop.

I was wheeled into A&E as I couldn’t stand

I was helped to the sofa where I lay down only to black out again. I was driven to the hospital where I continued to black out on the journey. I was wheeled into A&E as I couldn’t stand. For the next 3 hours while we waited I couldn’t lift my head up or sit up without passing out. It was only after 6 hours in hospital that the symptoms finally subsided and I could sit up and lift my head.

That’s really when my PoTS journey began and I was finally given blood tests, an ultrasound of my heart and a 48 hour heart monitor. All of these came back normal. I then had a tilt table test. I only lasted 2 minutes on the table before passing out. My blood pressure dropped dangerously low and my heart rate spiked. I was finally told I had PoTS -something I had never heard of before. As soon as I went home and looked it up, I couldn’t believe how similar my symptoms were to PoTS.

Since then I have continued to struggle with my symptoms. Having exercise intolerance means I struggle to stay active which has led to me deconditioning over the years. I also suffer with severe nausea and breathlessness when I have a flare up as well as fatigue a lot of the time.

Despite this though, my diagnosis has taught me:

• Don’t be too tough on yourself, you’re going to have good days and bad days. Just take one day at a time and know when you need to stop and rest.
• Have a good support network around you of family and friends, who understand your condition, can provide you with reassurance when you need it and help you to do the things you want to do within your limitations. Don’t be afraid to ask for help!
• PoTS can be an invisible illness. You may look young and healthy on the outside but PoTS is very real. Don’t be ashamed to ask for a seat, a fast track when you can’t queue or other aids when you need them.
• PoTS is caused by a faulty nervous system which affects almost all aspects of your body. So don’t be frustrated if you’re symptoms are not the same as others. My nausea, fatigue and fast heart are often my main problem, not dizziness.
• Reading other stories on PoTS UK and watching PoTS webinars on YouTube has really helped me with my recovery.

The relief of finally having a diagnosis really helped the way I looked at my illness and I have learnt with PoTS that I can still enjoy the outdoors, small walks and picnics, just at my own pace and with the people around me who I love. PoTS may define our health but it doesn’t have to define who we are.