Joseph, 25

When I was 10 years old, I started to suffer with tachycardia and chest pain. I had several investigations done by a cardiologist and even went to the children’s hospital in Bristol to be seen by a cardiologist. In the end it all got put down to anxiety and panic attacks. I pretty much suffered with these symptoms till I was 18 and then things got a lot worse.

Something isn’t right

When I was 18, I started passing out regularly and was in and out of hospital constantly. One day I refused to go home and said, ‘something isn’t right’, so the hospital decided to keep me in. I was put on a cardiac ward. I was on there for 2 weeks and in the end, they decided to do a tilt table test where they then diagnosed me with PoTS. I was relieved they had finally found something and hoped they would be able to help. The cardiologist put me on a medication and sent me home, but it never did help and things just got worse with my PoTS.

In the end, my mum found a consultant with a specialist interest in PoTS, EDS and dysautonomia so I was referred to him. This is when I was diagnosed with hypermobility Ehlers-Danlos syndrome, reflex anoxic seizures and organic non epileptic seizures. I have been under this consultant for 7 years now and he is amazing.

Sadly, I can’t stand anymore without getting leg spasms and I can’t walk either. I have to use a wheelchair all of the time and I am pretty much bed bound. I have carers as well now to help me go out and help me with my personal care.

PoTS and Ehlers-Danlos syndrome have changed my life

PoTS and Ehlers-Danlos syndrome have changed my life and I have no idea if I will ever be able to get up and do normal things again. I currently take around 20 tablets a day, including beta blockers. I also have IV fluid administered by paramedics (more often in the summer) if my PoTS and seizures are bad and my consultant has produced an acute care plan.

I also have an acute care plan for my organic non epileptic seizures and reflex anoxic seizures. My mum has to use a vagus nerve stimulator to slow my heart rate down in the seizures which helps bring me out of them. The vagus nerve stimulator is called a gammacore. My consultant found it in America, and it has saved several hospital admissions because of my seizures. If the gammacore doesn’t work my vagus nerve needs blocking and my mum uses an injection called Glycopyrronium block the vagus nerve.

(PoTS UK would like to add that this is a new therapy that is still in experimental stages and has not been fully assessed.)

I always wanted to be a paramedic from the age of 10 and sadly, that is out of the picture now.

I do ‘pay for it’ if I go out for the day but I feel I can deal with this because I still want to live the best life I can and enjoy the things that I can do.

Live the best life possible

I hope things will improve in the future. Whatever happens though, I will still try and live the best life possible and not let this illness get me down.

That’s my story. Thank you for taking the time to read it.