Conor

Hello, my name is Conor and I am 23. At the age of 17 my life changed forever after a simple fainting spell!

My name is Conor and at the age of 17 I began fainting multiple times a day, I couldn’t get out of bed, had severe chronic fatigue and doctors couldn’t explain why! After 7 months of tests I was finally diagnosed with PoTS. Up until that point I was extremely healthy and athletic, training in gymnastics for 30 hours a week, it was my life. At my first doctors appointment I was told (as I’m sure we have all heard once before) ‘it’s all in my head’ and I would ‘grow out of it!’ The condition continued to take over my life and doctors palmed me off, until 2021 when a major seizure put me in hospital and action was finally taken. 

Over the next 6+ years my PoTS symptoms continued to develop and progress, heart rates of 170+ became second nature and convulsive syncope a common occurrence in my life. Over these 6 years my life with Dysautanomia has been like a rollercoaster; PoTS along with IST, OH, NCS and OI (my primary forms of dysautanomia), along with chronic fatigue, digestive issues and MCAS. This all stems from having HEDS a rare genetic connective tissues disorder. Medication unfortunately doesn’t work with my body and has little effect on my symptoms so I rely on fluids, salt and pacing myself as my best chance of getting through the day.

As we are all aware, viral illness can make PoTS much worse and for me that was the case. I contracted Covid in 2021, strep throat in 2022 and Covid again in 2023 and it made my life a living hell from that point onwards. It put my chronic illness into overdrive and my PoTS became unbearable, I could barely get out of bed for over a year without 180 HR 70/30 BP and SO MUCH FAINTING! I have only recently been able to get back to a semi normal life which I couldn’t have done it without the support of my amazing family and friends..

I think it’s extremely important to share my story as a man with PoTS as it can be overlooked as a ‘woman only illness’, as I was once told by an incompetent doctor. I think it’s important to spread awareness about this condition as it is still overlooked by so many doctors and healthcare professionals. I hope this story sheds some light into our lives with PoTS, I will continue to fight my condition and have power over PoTS!