Basingstoke Team Parish

Johnny: PoTS has changed my life but not over taken it.


Hi, my name’s Johnny, I’m 26 and I’m from Hertfordshire.  I wanted to share my story purely to share it with others who also have been affected by this still largely unrecognised syndrome and for those who are interested in PoTS. My story will tell the rollercoaster of my diagnosis and my overcoming of the fear and anxiety that developed after my diagnosis.

I was diagnosed with PoTS in May 2013 at Addenbrookes hospital in Cambridge.

One day I was fine, the next I was symptomatic. I had been to the hospital with my partner for a 20 week scan of my youngest daughter. My partner had said to me, “You don't look right hun”, but I thought I’m fine. Later that day we returned home and we were standing in the kitchen talking when all of a sudden I began to feel my heart racing. I began to sweat, my hands turned purple almost, I felt dizzy and my chest was very painful. If I’m completely honest I thought I was having a heart attack. Next minute, the lights went out; I had collapsed.  

When I came round I felt confused, lost, wondering what had happened.  Then I began to shake with extreme tremor so my partner called an ambulance.  When the paramedics arrived they did some observations, said they were fine and that I most probably had a panic attack so they left me at home. Later that day it happened again, exactly the same onset of symptoms, only this time I didn't faint but I had extreme tremor so again called an ambulance. When the paramedic arrived he could see there was no panic, just a very fast heart rate, tremor, sweating and my complaints of feeling faint.

He was not happy with my situation so sent me to hospital. They did tests for a heart attack but again told me it was anxiety attacks! Later that week I was admitted into hospital for 4 days where I underwent observation and tests. It wasn't until I received the tilt table test that they realised something was really up. Everything that I had been feeling over that last week hit me like a ton of bricks. My heart started to pound, I became very symptomatic and shortly after had loss of consciousness.

After having my diagnosis and coming home my whole life changed. It was the start of a new life . PoTS isn't just fainting – it’s an illness of many different symptoms that affects us differently every day. The list is so very long: the chest pain, shoulder pain, the lack of concentration, brain fog, nausea, the list goes on… I went from being a normal everyday working man to being incapacitated. My life had changed completely. I couldn't leave the house; mobility was and still is a massive issue. I became depressed living in constant fear of the next onset on symptoms, a constant sense of doom and fear of death in the back of my mind. I was thinking is this just PoTS or is there something more sinister going on here – is my life at risk? How would my family cope? The negative thinking went on.

All this in turn made my experience a whole load worse every time I had an onset of symptoms. I would worry and before the onset I’d be scared so I lived my life in constant fear of the PoTS. It just made things worse until eight weeks ago when I met Jodi who also suffers with PoTS, MCAD (mast cell activation disease) and EDS, and her friend Kathryn who also has her own health limitations. They chose me and 9 others to undergo a programme to help with fear and anxiety (of chronic illness in my case). To be honest I believe everyone with illness will have natural fear and anxiety. I began having counselling sessions with Jodi over 8 weeks for 2-4 hours a week and studying all the material within the programme I began to learn to accept the biggest problem with chronic illness is being able to accept what is happening to you. It was hard longing for how I used to be, thinking about what would happen in my future, etc. What I began to realise is that NOW is the most important thing – this very moment – and we have to learn to live in the moment. This is now how I accept this life debilitating illness. I have days when the most simple of tasks becomes a challenge but now I can cope a lot better with it. I owe all my thanks to these truly remarkable people. Taking their own time and put their own problems on hold to help other people defiantly has the WOW factor.

PoTS has changed my life but not overtaken it. The power of gravity really is quite something, something many people take for granted as for some of us the simple act of standing and moving around can be a challenge. I'm only just under a year into my diagnosis so I still have a long way to go. I hope for me and for others things will get better and one day there will be some form of cure for this life changing syndrome.

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