ADS
On the first day of my summer holiday I was standing outside a bar, drinking with friends. Everyone was laughing and joking, looking forward to a brilliant week in Spain. But something was wrong. And I knew what was going to happen.A fluttering in my stomach triggered a quickening heartbeat. I started overheating and sweating. Then a wave of anxiety swept through me, and I felt like I was drowning in white noise.
As the attack reached its climax, I was overwhelmed by an urge to lie down.
Matt Cain had fainting episodes and was undiagnosed for 30 years only to find out he had a faulty heartbeat
As ever, it was terrifying. But there was nothing I could do. The next thing I knew, I was waking up on the floor, surrounded by people panicking that I'd been unconscious for nearly 30 seconds.
I sat up and reassured them there was nothing to worry about - this happened all the time. But I was rushed by ambulance to hospital, where they ran all kinds of tests to check I hadn't damaged my head as it hit the ground.
I was fine - though too exhausted to care. I remained worn out for a few days and was left with such acute anxiety about another attack that my holiday was ruined.
Since the age of seven, I'd fainted on countless occasions. And over three decades, coping with the condition - whatever it was - had become part of my life.
There were periods when I'd faint a few times a year, but others when it would happen a few times a day. And although there were some triggers I'd learned to look out for - being tired, dehydrated, stressed, claustrophobic or too hot - an attack could occur at random.
By the time I was working as the culture editor of Channel 4 News, I was so terrified of it happening when I was on camera that I took beta-blockers to manage my anxiety. They helped and I was fortunate not to have an attack on air. But I had no idea what was wrong.
His condition is highly dangerous and he has now had fitted pacemaker
Then after that holiday in Spain, I was so fed-up with how my undiagnosed condition was affecting my life, I went to my GP and told him I needed an answer.
Not that I hadn't already been offered several. A succession of specialists - NHS and private - had told me my attacks were down to adolescence, iron deficiency, slow heart rate, low blood pressure or even epilepsy.
Others said my problem was purely psychological - an extreme form of panic attacks, which made me feel it was something I should be ashamed of. I spent thousands on hypnotherapy, cognitive behavioural therapy and psychotherapy - but none made any difference.
By my mid-30s, I'd become dependent on beta-blockers and was taking the maximum dosage of anti-epilepsy drugs. I was so out of it I had no idea how often my attacks happened. My memory was decimated, my sex drive disappeared and my sparkle diminished.
But one thing I was sure of - the problem was getting worse. And 30 years of living in fear of it had reduced me to a nervous wreck.
Every area of my life had been contaminated: going to the hairdresser, eating out, trips to the cinema and theatre - not to mention first dates and job interviews. You name the situation, I've fainted in it.
And the more I worked myself up in expectation of an attack, the more likely it was to happen.
When the epilepsy diagnosis was overturned, since the drugs didn't work, I saw no alternative but to believe all those specialists who'd told me it was self-induced.
When I went back to the GP after that holiday in 2012, I was at breaking point. At the first stirrings of an attack, I'd started wishing I wouldn't wake up afterwards.
After so long without a satisfactory answer, I expected to be fobbed off. But I was referred to the National Hospital for Neurology in London for a 'tilt table test'. I lay on my back and was strapped to a table that was tilted forwards, suspending me head-first at 60 degrees.
Electrodes were placed all over me and I was injected with a drug that made me lose consciousness for 20 seconds. This was done twice. For someone who'd spent his life in fear of such attacks it was the closest thing I could imagine to torture.
'By my mid-30s, I'd become dependent on beta-blockers and was taking the maximum dosage of anti-epilepsy drugs'
Once it was over, as usual I was exhausted. The worst thing was, as I hadn't known what to expect and had travelled to the hospital alone, I had to be accompanied home by a nurse. I had reached my nadir. But the test finally gave me the answer. And my problem was definitely physical, not psychological. I have autonomically mediated syncope with asystole. Most doctors haven't even heard of it.
It's difficult to say how many adults are affected, as symptoms can be similar to epilepsy, which explains why misdiagnosis is so common.
But recent research by the All-Party Parliamentary Group on Epilepsy shows that up to 30 per cent of adults diagnosed with epilepsy actually suffer from some form of syncope - where they faint or black out. This represents around 125,000 people in the UK. Autonomically mediated syncope is a problem with the 'automatic' nervous system, which allows different organs to communicate with each other.
The pathways from my brain to my heart are defective, instructing my heart to shut down.
This is commonly known as 'flat- lining', the near-death experience made into the film Flatliners, starring Julia Roberts.
In my case, my heart rate races, drops sharply, cuts out completely for about 20 seconds, then restarts. I lose consciousness because it interrupts the circulation of oxygenated blood to the brain.
However, the brain has a mechanism to restart the heart, so there's no chance of it cutting out permanently - and even the most frequent attacks leave no permanent damage. The real risk is that you badly injure yourself as you fall.
Mark has autonomically mediated syncope with asystole. Most doctors haven't even heard of it
I was referred to Dr Diana Holdright, a consultant cardiologist. She told me she'd met countless people like me, often after years of misdiagnosis. There was even a support group - STARS (Syncope Trust And Reflex-anoxic Seizures). I was tearful with relief. Soon afterwards, I was admitted to hospital to have a pacemaker fitted. Since then, whenever my heart rate has dropped, my pacemaker has kicked in to stop my heart from cutting out.
So far, it hasn't let me down and I haven't fainted for nearly a year. I've been able to come off all medication, which has restored my energy and my memory. I finally feel like I've started living.
But my story doesn't end there. A month after the operation, I returned to Dr Holdright for a check-up. I was told there was bad news - my pacemaker had kicked in 817 times in the first month, that's 817 times when previously I would have fainted. Mine was the worst case of autonomically mediated syncope she had ever seen.
I didn't see the news as bad. For me it justified how worked up I'd been. I was diagnosed with post-traumatic stress disorder and referred to a psychologist, who explained that after decades of living in my own metaphorical war zone, my body was in a constant state of high alert. I had to readjust to living without fear.
I've now made that adjustment - and decided to give up my stressful job at Channel 4 to devote myself to my ultimate ambition, writing novels. The first, published this month, is a romantic comedy about a Hollywood actress who falls in love with a paparazzi photographer.
The title? Shot Through The Heart. Most people can spot the double meaning, but only those who know what I've been through can spot the third.
ADS
No comments:
Post a Comment