'I recovered from Covid and was fine for a year – then I started blacking out'

Leo was in his late 20s and living life to the full when the pandemic hit.

Sports-mad Leo, who lives in London, would cycle 90 miles at the weekend and ride to work every day, he played squash, was a runner and has even done triathlons. Nobody expected Covid to hit him this hard.

Leo has decided not to be pictured for this story because he is trying to move on from his ordeal, but wants to share his experiences to help others who may be in a similar situation.

A few months ago, Leo started dropping unconscious and wetting himself at his desk while at work.

The problem became so bad he now has to work from home permanently and has had to have a heart monitor fitted that will be monitored by doctors for three years.

After numerous tests including an MRI brain scan, seven-day heart monitoring and a brain wave EEG, doctors concluded Long Covid has affected Leo’s autonomic nervous system (the system that stems from the brain and regulates bodily functions, such as the heart rate, digestion, respiratory rate and urination) and his blood pressure control.

Leo was shocked because although he had caught Covid early on in the pandemic, he had been back to full health for at least a year.

‘It was right back at the very start of the pandemic, think back to March 2020,’ says Leo, now 30.

‘I came back from a French ski resort where I had been on a stag do. It happened within five days of returning. I went to bed that night feeling fine. I got up in the middle of the night to go to the toilet, and as I stood up I lost consciousness. I just blacked out.

‘When I came around, I was face-down on the carpet, drenched in sweat. I got back in to bed, I had no idea what was wrong.’

Over the next few hours and days, all the classic symptoms of Covid started to appear. Leo experienced shortness of breath, loss of taste and smell, and exhaustion. The symptoms persisted for a month.

‘At the time, the world was in a bit of a panic,’ says Leo. ‘We had no idea what was going on with the virus. You couldn’t get a test for love nor money. Nobody was able to help me.

‘I called 111 at one point because I was feeling like I was starting to struggle to breathe, but they kind of said, “You sound like you’re alive”, and didn’t send an ambulance or anything.

‘Eventually, I got through it. And I was fine. At least at first.’

Leo says it took him around three months to shake off the exhaustion. He needed to have naps in the afternoons and couldn’t exercise like he used to. But then he got his energy back, and he felt back to normal for about a year.

Then in July 2021, Leo collapsed at his desk with no warning.

‘It was a normal morning, nothing out of the ordinary, and just like that – like the flick of a switch – the lights just went out and I lost consciousness at my desk,’ he says.

‘When I came around, I was covered in sweat again and just felt really quite awful.’

Leo went home and was bed-bound for two weeks, feeling completely drained of energy and needing to sleep throughout the day. But, he believed it was an isolated incident, and when his energy returned he went back to work.

‘Then in November just gone, pretty much the exact same thing happened at work again, except this time I had urinary incontinence as well. Then it happened again four days later while I was sat at the kitchen table.’

This time, his housemate saw Leo collapse, which was really helpful for explaining to the doctors exactly what happened when he lost consciousness.

‘He is one of my best friends and he is an A&E registrar doctor and he witnessed the whole thing,’ says Leo.

‘He said it was a textbook vasovagal syncope – which is a kind of miswiring in the body where the nervous system reacts to a stimulus. Another example is where a soldier is on parade and gets too hot and just collapses.

‘I turned grey in complexion and just fell sideways off my chair. My friend caught me and lowered me on to the floor and put my legs in the air. Apparently I regained consciousness after 45 seconds. And again, I had wet myself.’

For the last few months, these persistent episodes of blacking out have turned Leo’s life upside down. He now has to work from home, he has had his driving license taken away, and he is nervous to go out for social events because he gets no warning before losing consciousness.

‘I have seen every kind of doctor under the sun and had loads of tests done,’ says Leo. ‘Pretty much all of them say that I’m perfectly normal. I’ve had scans for epilepsy, I’ve had monitors on my heart. I’ve had brain MRI scans, blood tests, pretty much everything any doctor can think of, and all the results have come back normal.’

Just before Christmas last year, Leo saw a cardiologist who first suggested that his strange symptoms could be connected to having Covid. He said he was starting to see similar patterns in other patients.

‘Initially, he thought he was imagining things. But the more time goes on the more he is certain there’s a direct link between people who had Covid badly at the start of the pandemic, and people who are now presenting with weird nervous system problems.

‘He referenced another patient of his, a 30-year-old guy, who was like a big runner, really into his fitness. Now, when he goes through a run, he will come home and his heart rate will stay at 140 beats a minute for the next three hours. It takes him hours to return to a normal resting heart rate.

‘He said he is seeing all kinds of weird things he has never seen before. And he has been a consultant cardiologist for 40 years.’

This is unnerving for Leo, and for the thousands of patients struggling with Long Covid symptoms. Doctors just don’t quite know what they are dealing with, and as a result, the future for patients can feel incredibly uncertain.

‘The concerning thing for me is how long it takes for me to recover after I have an episode,’ says Leo. ‘It’s not like I black out and then feel fine in an hour, I get groggy and drained and severely exhausted for weeks.

‘I spent the first half of December in bed, pretty mush sleeping for 15/16 hours a day.

‘I’m otherwise extremely fit and healthy and have never had any medical problems in my life. So obviously, something like this does rock the boat and put you on edge. I have spent months thinking, “Oh, God, what is happening? What on earth is wrong with me?”‘

Doctors have now implanted a chip in Leo’s chest so that if he does have another blackout, what happens to his heart when he falls unconscious will be recorded, which could help doctors figure out exactly what is causing it and how to treat it.

‘If the data shows that my heart rate is dropping to 30 beats a minute, and that’s why I’m blacking out, that is kind of good news,’ he says. ‘But If it doesn’t show anything to do with my heart then we are essentially back to the drawing board in terms of medical action.’

Going forward, this instability and ongoing uncertainty around his health has forced Leo to reassess a lot of fundamental things about his life and what’s important to him.

‘Before all of this, I did a huge amount of exercise. So when I’m ill and I can’t exercise I get really quite upset and frustrated,’ says Leo.

‘But this experience has made me question how much exercise I am doing, maybe I should be cutting back. I trade for an investment bank for a living – is that all a bit stressful, lifestyle-wise?

‘Do I need to be a bit more sensible about the intensity at which I live my life?’

Long Covid – what you need to know

Most infections with Covid resolve within the first four weeks. Long Covid is a term commonly used to describe symptoms that continue or develop after you’ve had the initial virus.

An estimated 1.5 million people in the UK (2.4% of the population) have reported experiencing Long Covid symptoms.

The recovery time is different for everyone. The length of your recovery is not necessarily related to the severity of your initial illness, or whether you were in hospital.

According to the latest reports, Long Covid is most common in people aged 35-69 years, women, people living in more deprived areas, those working in health care, social care, or teaching and education, and those with another activity-limiting health condition or disability.

Common Long Covid symptoms include:

• Extreme tiredness (fatigue)
• Shortness of breath
• Chest pain or tightness
• Problems with memory and concentration (“brain fog”)
• Difficulty sleeping (insomnia)
• Heart palpitations
• Dizziness
• Pins and needles
• Joint pain
• Depression and anxiety

If new or ongoing symptoms do occur and they are causing you concern, you should always seek medical advice and support.

For more information and support you can apply to join the Long Covid Support Group on Facebook, which currently has more than 50,000 members.

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