Woman living with ‘scary’ illness that has made her heart stop eight times
A woman whose heart keeps stopping says she won’t lie around feeling sorry for herself.
Amy Metters, 28, has had her heart stop eight times in her lifetime and suffers from a rare condition called postural tachycardia syndrome (PoTS) which causes an abnormal heart rate after sitting or standing up.
Amy, from Plymouth, was just 18 when her life changed dramatically as she fainted at a train station, reports DevonLive.
After the incident she couldn’t stand up without fainting.
She was later diagnosed with PoTS which was brought on by a repeated viral infection, tonsillitis, which she had around five times in a few months.
But in August 2017, Amy went completely numb from the waist down and she went into cardiac arrest after arriving at Derriford Hospital.
During the week-long stay, it stopped three more times.
Since then, she has gone into cardiac arrest another four times, bringing the total to eight.
She said: “I gave up hairdressing when PoTS started because I was passing out all the time, that was the main problem.
“I had that fairly well under control. I then was a dental nurse and I lifted a really heavy chair at work and hurt my back. It was like it for weeks and I saw a physiotherapist and a chiropractor and had painkillers.
“Then all of a sudden one night, I literally went numb from the waist down. I went into the hospital and really randomly my heart stopped.
“No explanation, it just stopped.
“They gave me CPR, broke a couple of ribs and while I was in there, I had another three, so I had four altogether while I was in hospital. My heart just stopping.
“There was no real answer, at all. It’s not a kind of symptom of PoTS, there was no answer.”
Three months later Amy found herself in Bristol for a concert with a group of friends when she began to feel unwell.
She “kind of knew the signs by then” so went outside – but doesn’t remember anything else apart from waking up in an ambulance.
Amy’s heart stopped for a fifth time in the ambulance for three-and-a-half minutes.
After she has travelled home from Bristol she was in a queue for A&E when her heart stopped for the sixth time.
Amy recovered and then did not experience another cardiac arrest until November 2019 when she was working at EE.
She said: “One of the first aiders gave me CPR and I was in hospital for a week
“I’m really stubborn and I just get on with it, so I went back to work two weeks later part-time and I had another one at EE again.
“It’s scary, I think I am very positive about it and people think I’m mad. I will make the odd joke about it but at the time, sleeping was an issue.
“I was absolutely petrified to go to sleep in case I didn’t wake up, so it kind of affected things like that and not knowing what to do with work and I didn’t want to not work.
“It has been hard, I can’t pretend it’s been easy.”
Amy has a PoTS consultant and has seen a specialist in London, but the condition does not “seem to link” with the cardiac arrests.
“No one can really give me an answer,” Amy said.
“I have a PoTS consultant that I’ve seen for 10 years, I see him every three months.
“I’ve been up to London to see a specialist, I’ve got PoTS but that affects how fast my heart rate goes, but my heart stopping isn’t a symptom of that.
“My heart stopping is a complete mystery to be honest. It’s hard because they haven’t got an answer, they can’t just pluck out an answer.
“They can’t give me a pacemaker, one for my age, they just wouldn’t do it because they say I’m too young. My heart doesn’t just go too fast or too slow, it goes both.”
Amy said she “just has to hope it doesn’t happen again, and if it does, hope I’m that lucky all over again”.
While Amy admits it is “scary” she is inspirationally positive and is blogging her way through her journey in the hope of helping others and raising awareness around her condition.
Her blog has connected Amy with other people who have been diagnosed with PoTS and is read by doctors.
She said “I’m not one to lay around feeling sorry for myself, I live my life as positively as I can.
“It’s not always easy, and I have down days like everyone else, but changing your mindset can be so important and focusing on healing and the positive things in life can change everything.
“My blogs are raw and they are truthful but I want to give people in similar situations hope that with strength and determination anything is possible!”
Postural tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include dizziness and fainting.
It’s sometimes known as postural orthostatic tachycardia syndrome.
PoTS affects a range of people but is most common in girls and women aged 15 to 50.
Some people have mild symptoms, while others find the condition affects their quality of life. PoTS often improves gradually over time, and there are some medicines and self-care measures that can help
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