When Samuel Carvalho, now 27, noticed his heart was beating faster than usual, he did the right thing and went to see a doctor immediately.
“I was sat at home watching TV in 2011 and I could feel my heart beating really fast. It was pounding and I had palpitations,” he told The Mirror.
At the GP surgery, he explained his symptoms to a receptionist, who was concerned enough to bring him in for an emergency appointment.
After a nurse and a senior doctor checked him over, Samuel was sent straight to hospital.
“They did an ECG that showed my heart rate was near the 200s, which was really concerning for someone my age,” he explained.
For more of the news you care about straight to your inbox, sign up for one of our daily newsletters here
When he was taken in for assessment, doctors were baffled by Samuel’s heart rate and couldn’t explain why it was so high.
Undiagnosed, Samuel carried on with life as best he could, although for the first few years he admits his condition “wasn’t super problematic.”
However, in 2015, things started to change for the worse.
“All of a sudden, with no explanation, my episodes went from once a month or every few months to weekly. I started losing consciousness and collapsing,” he said.
Although the incidents were incredibly frightening, Samuel said he would experience symptoms like dizziness, which would warn him of what was about to happen.
However, as time passed, the symptoms that allowed Samuel to prepare disappeared, leaving him completely unable to know when he would next collapse. To make matters worse, the episodes were now happening on a weekly basis.
“Now I can be feeling absolutely great, but then I’ll collapse without warning,” he said.
Samuel, who lives with his partner Ashleigh and their son Sebastian, now has a support dog, Lola, who stays with him at all times in case he has an episode. He rarely goes anywhere on his own and adjusts his behaviour when he is in public, to make sure he limits his risk.
He explained: “I started consciously adjusting my centre of gravity so I’m leaning away from the traffic. So if I collapse, it’s away from the hazards.
“I have collapsed in the road before and nearly had my head run over.”
Although Samuel has learned to live with his condition, he’s had to give up his once-active lifestyle of cycling and swimming.
And ten years on from his first episode, Samuel still doesn’t have a diagnosis for his condition. Cardiologists have tried all sorts of different medication to bring down his unusually high heart rate, but none of them have worked long term.
“There are similar conditions to mine, like inappropriate signs of tachycardia, but they’ve compared my paperwork with others from around the world and it shouldn’t be as aggressive as my condition,” he said.
Now, Samuel has become familiar with paramedics in his area in Cambridgeshire, because he has to call them out around once a week when he has an episode.
Because he can be anywhere when he collapses, Samuel needs to give his precise location when he calls 999.
A few years ago, he discovered an app called What3Words, which he uses to give a 3mx3m precise location to paramedics about where he is.
Do you have a real life story? Email jessica.taylor@reachplc.com
In the last few months, it has come in incredibly handy as he moved out to rural Cambridgeshire.
“You could be in the middle of nowhere, but the app will coordinate with paramedics and they’ll find you,” he said.
The app is also helpful for Samuel’s partner, who has had to call out an ambulance when Samuel has collapsed in the car while they were on the motorway.
“It’s really good because we’ll often be unsure of exactly where we are,” he explained.
Although he still doesn’t have a diagnosis for his condition, Samuel doesn’t let it get him down.
He said: “These days, I don’t worry about it too much because I just don’t know when it’s going to happen."
