Richard’s story of living with POTS

I’m 46 now.. my first ‘meeting’ with POTS/Dysautonomia was when i was 23.. i lost 50 pounds, high heart rate, fatigue. pain.. no one knew what was going on. It took me 4 years to feel better. Its like i grew a bit out if it. It never was completely away, but i was able to study, sport..LIVE..

Then may 2008.(i was 35). i became unwell one morning and it never went away. It took 8 long tough years to get diagnosed. I’ve been gone through hell in those years because doctors couldn’t find what was wrong & kept telling me it was stress/anxiety. Finally in 2016 i myself understood what was going on, cause during all those years mostly bedridden i skilled myself in medical literature. I found out about Dysautonomia and i instantly knew i had at least POTS.

I found a professor in my country who did dysautonomia research and wrote him my story by mail. HE got me referred and within 15 minutes of being in Radboud UMC i got diagnosed with POTS.. a week later the diagnosis got confirmed through excessive autonomic nerve system testing. None of my former doctors , which i wrote later apologized for wanting me to be put into a mental institution because i kept visiting them for 8 years, ended on E.R’s, telling them something wasn’t right, it couldn’t be just stress/anxiety.

I have/had lost many years of my life and due to the long time it took to get proper help i physically became much worse than would’ve been necessary. on top of this i have fibromyalgia/cfs. I’m 46 now, still trying to cope with my illness. I know there isn”t much research about men, my age and POTS..

Many people underestimate the influence this disease has on many ‘victims’ lives.

I’m very happy Dr. Gupta makes an effort to learn&educate more about dysautonomia/POTS

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