Man, 27, with 'uncontrollable epilepsy' suffers up to 200 fits a DAY

Fitness fanatic, 27, diagnosed with ‘uncontrollable epilepsy’ after falling over and banging his head aged two is now a black belt in martial arts and runs two businesses despite suffering up to 200 fits a DAY

  • James Bailey, 27, of Essex, began enduring crippling fits after falling over aged 2
  • Was told he’d lose use of the right side of his body, and would ‘not have a future’ 
  • Subjected to horrific bullying throughout school due to uncontrollable spasms
  • Fits would last up to 40 minutes and he has had around 465,000 seizures to date
  • Tried to take own life after ‘strain’ of his condition ’caused partner to miscarry’
  • Refused to let condition define him and has written a memoir about his journey 

A fitness fanatic described by doctors as a ‘miracle’ has told how he excelled at boxing and martial arts despite regularly suffering up to 200 epileptic fits every day – around half a million in his life.

Brave James Bailey, 27, began enduring crippling fits soon after he fell and banged his head on a pavement outside his parent’s home in Essex when he was just two years old.

Doctors quickly diagnosed him with ‘uncontrollable epilepsy’ and told his heartbroken mum and dad he’d have to wear a crash helmet every day, would lose the use of the right side of his body, and would ‘not have a future’.

Throughout school he was subjected to horrific bouts of bullying from classmates who branded him a ‘freak’ and even mocked his body’s uncontrollable spasms.

Brave James Bailey, 27, has excelled at boxing and martial arts despite regularly suffering up to 200 epileptic fits every day – around half a million in his life

James was told he’d have to wear a crash helmet every day, would lose the use of the right side of his body, and would ‘not have a future’ – but he’s proved doctors wrong

While longer fits would last up to 40 minutes he also suffered clusters of smaller, shorter ones; sometimes four in five minutes, resulting in him being taken out of school and rushed to hospital.

But James refused to be defined by his condition and, after leaving school, took up martial arts and boxing – despite being told another blow to the head could be disastrous.

He was later diagnosed with refractory (drug resistant) epilepsy, having suffered several types of seizures, including generalized and focal seizures, at the same time.

In 2019 he recorded an average of 250 seizures per day, including more than 100 alone in the first two hours of being awake. At one point, James tried to take his own life after fearing the stress of his condition caused his now ex- partner to miscarry their child. 

But determined James has picked himself back up and is intent on pursuing his dreams. He currently runs two successful businesses side by side; one as a landscape gardener, the other as a personal security and self-defence coach for a string of well-heeled clients.

James began enduring crippling fits soon after he fell and banged his head on a pavement outside his parent’s home in Essex when he was just two years old (pictured not long after his diagnosis)

And he plans to launch a third, more personal venture, to provide mentoring to others who have been bullied or suffer from anxiety issues following the release of his new memoir, Light In The Shadows: A Life of Epilepsy.

James told FEMAIL: ‘I have dealt with this condition through every stage of my life. A lot of people with epilepsy have three seizures a week. I absolutely blow that out of the water.

‘In terms of seizures, I am like a Ferrari. I rapidly go from zero to 100, and as soon as the doctors get my medicine right, I stop just as quickly.

‘I have spent around eight-and-a-half years of my life totally uncontrolled. When you take into account that I average at least 150 seizures per day when uncontrolled, then I must have had 465,000 seizures to date, and that’s being conservative.

‘It’s physically exhausting but I think your body either breaks or adapts. Because I was having so many at such a young age it has just become part of my life.

At one point, James tried to take his own life (pictured four months after), fearing the stress of his condition caused his now ex- partner to miscarry their child

‘It has, however, had a big impact. When uncontrolled, the right side of my body goes dormant. My brain basically forgets I have a right side, so I am unable to walk or use my right hand when in this state.

‘Sometimes I have long seizures of up to 40 minutes and then I have shorter, focal ones which appear in clusters, such as four in five minutes.

‘The seizures are continuous. Some are complex partial seizures, and some are full-on, often taking place at the same time. Mix that with the hallucinations I have as well when I’m having a seizure and I have a chemical disaster going on in my body.’

Every time James has a bad seizure, he spends around two weeks in hospital, remaining bedbound until doctors can bring his condition back under control.

‘They can’t discharge me until this is done as I could fall down the stairs and break my neck,’ he explained.

As a child James needed 24-hour observation and struggled throughout school as other children bullied him about his condition (pictured with his sister as a child)


Throughout school James was subjected to horrific bouts of bullying from classmates who branded him a ‘freak’ and even mocked his body’s uncontrollable spasms

James’ seizures began two weeks after the fall he suffered as a toddler which resulted in damage to his left temporal lobe. He spent every night sleeping with his parents in case he began to fit, and was only able to bathe in water three inches deep to prevent him from drowning (pictured with his mother)

‘One of my neurologists has described me as a “miracle”. When I had my first appointment with him, I walked into the office and he looked amazed. He said that he hadn’t been expecting to see somebody as capable as me, given the severity of my condition.’

What is epilepsy?

Epilepsy is a condition that affects the brain and leaves patients at risk of seizures.

Around one in 100 people in the UK have epilepsy, Epilepsy Action statistics reveal.

And in the US, 1.2 per cent of the population have the condition, according to the Centers for Disease Control and Prevention.

Anyone can have a seizure, which does not automatically mean they have epilepsy.

Usually more than one episode is required before a diagnosis.

Seizures occur when there is a sudden burst of electrical activity in the brain, which causes a disruption to the way it works.

Some seizures cause people to remain alert and aware of their surroundings, while others make people lose consciousness.

Some also make patients experience unusual sensations, feelings or movement, or go stiff and fall to the floor where they jerk.

Epilepsy can be brought on at any age by a stroke, brain infection, head injury or problems at birth that lead to lack of oxygen.

But in more than half of cases, a cause is never found.

Anti-epileptic drugs do not cure the condition but help to stop or reduce seizures.

If these do not work, brain surgery can be effective.

Source: Epilepsy Action

As a child James needed 24-hour observation and struggled throughout school as other children bullied him about his condition. 

‘As soon as you start school you have 100 kids around you and you compare yourself to them, and that’s when you really notice you’re different,’ he explained.

‘Even in primary school, kids either avoided me or when I was walking down the corridor they would start mimicking me.

‘Going into secondary school, I would queue up for my form class and be pushed about. Kids would shove me out of the way and call me an ‘epileptic freak’.

‘Being avoided was like social distancing is now. It was horrible to have to suffer that as a kid. No-one wanted to come near me and if any of the children tried to talk to me then the older ones would tell them not to and threaten them if they dared to do so.

‘Once, during a sports day, I was running around the field when I collapsed to the floor in front of the whole school.

‘I blacked out but never lost consciousness. I came around to see all the teachers looking at me, and all the kids doing the same. It was horrendous. I felt like an animal at the zoo.

‘Every time I blacked out I would come round and look at my sister, Kirsty, who was a year and a half older than me, and say, “I want to go home”. It was awful.’

James’ seizures began two weeks after the fall he suffered as a toddler which resulted in damage to his left temporal lobe.

He spent every night sleeping with his parents in case he began to fit, and was only able to bathe in water three inches deep to prevent him from drowning.

James was later prescribed hefty adult doses of anti-epileptic medicine lamicital lamotrigine, despite only being a child, and the drugs – coupled with the amount of time he spent in hospital – meant he struggled at school.

At the age of 16 he was estimated to have a reading, writing, and speaking age of an eight-year-old. 

Each time he went into hospital, tests were carried out to try and discover the cause of his condition and the best medication to control the seizures.

Every time James has a bad seizure, he spends around two weeks in hospital, remaining bedbound until doctors can bring his condition back under control

Refusing to succumb to his condition, James battled on after leaving school and landed a job in a warehouse before taking porter and security roles at two hospitals near his home.

Keen to push himself as hard as he could, at the age of nine he took up judo and at 17 he started boxing, against the advice of neurologists.

He then moved onto Kuk Sool Won, a Korean martial art, and excelled to such an extent he reached the level of a black belt candidate, teaching classes of up to 30 children and adults.

James even took part in the European Championships in 2014, where he picked up a gold in sparring, a silver in technique and a bronze in ‘forms’. 

Now James’ medication seems to be regulating his condition and he has managed seven months without a seizure. He has just set up a GoFundMe page to help launch this support service, and will also use proceeds from sales of his book towards realising this goal

After leaving his job at the local hospital he went into landscaping before starting his own business which now has six employees. Alongside that he did a close protection body guarding course, including firearms and advanced driving training, and now teaches self-defence.

But just when things were looking up, James’s relationship of seven years fell apart. With plans for a wedding in place, and with his fiancée expecting their first child, James suffered more seizures and spent two weeks in hospital.

During his stay in hospital, his partner tragically miscarried, something which James blames himself for because of the stress his illness put on his fiancée. Subsequently he says the relationship collapsed because of the strain.

Eventually, heartbroken James, who tried to take his own life in the weeks following his partner’s miscarriage, moved back home to live with his parents. He was 25.

In the long-term, James hopes to be able to open a dedicated mentoring centre in the UK where he can help people of all ages transform their outlook from viewing their condition as a ‘curse’ into a ‘blessing’ (pictured after passing his driving test)

Now, however, his medication seems to be regulating his condition and he has managed seven months without a seizure. He plans to draw upon his own experiences to provide a one-to-one mentoring service, supporting people both in the UK and around the world with potentially debilitating physical and/or mental conditions including epilepsy, obesity, mobility issues, depression and anxiety.

He has just set up a GoFundMe page to help launch this support service, and will also use proceeds from sales of his book towards realising this goal.

In the long-term, he hopes to be able to open a dedicated mentoring centre in the UK where he can help people of all ages transform their outlook from viewing their condition as a ‘curse’ into a ‘blessing’.

He said: ‘Just because you’ve been dealt a bad hand it doesn’t mean you can’t end up doing well in life. I know it may be difficult for some people to understand but, for me, my condition isn’t a curse, it’s a blessing. It has allowed me to gain all this experience that I can now use to help others.

‘My parents brought me up to be positive. They said I was unique, not disabled. I know I can give people hope and help them become the best that they can be.

James, pictured with his mother, said: ‘My parents brought me up to be positive. They said I was unique, not disabled. I know I can give people hope and help them become the best that they can be’

‘My book is the starting point. I want readers to be inspired by my own story and recognise that they can also achieve. I have put my direct contact details in the book and I openly invite people to contact me for one-to-one mentoring.

‘Maybe they don’t like who they are, or feel they are not clever enough. If so, I will help with building their confidence and teaching them how to see their lives in a positive light.

‘If they are being bullied, we will work on how to prevent this by building their self-esteem while learning self-defence so they can stand up for themselves.

‘Money I raise will help me mentor, tailor-make program, provide support where needed and travel to individuals. I will spend several weeks with them at their own home to provide dedicated mentoring.

‘As time goes on and I build my name up I would like to have my own mentoring centre. I’ve already found the ideal location and all I need now are the funds.

Despite his positivity, however, James still recognises that he has mountains to climb (pictured during a recent stint in hospital)

‘I know only too well that a positive mindset is essential. I’m not saying it’s a fix-all as I’m the first to appreciate that I am incredibly lucky. There are others who have been left in a far worse, and permanent, state with far fewer seizures.

‘But if you look online, too often you see support groups where the advice is just so depressing and negative. It’s enforcing the wrong messages. Railing against a situation being “wrong” or “awful” isn’t going to help in the slightest.

‘My parents have said that if they could have spoken to somebody like me back then when this all started, it would have given them hope about my future. At the time, though, they had nothing.

‘If we don’t end up doing what we want to do in life, or at least try, then what’s the point of living? I am not letting my epilepsy stop me and I have never given into bullies, and I never will.’

Despite his positivity, however, James still recognises that he has mountains to climb.

James refused to be defined by his condition and, after leaving school, took up martial arts and boxing – despite being told another blow to the head could be disastrous (pictured in 2017 after a nuclear mud run success)

Determined James currently runs two successful businesses side by side; one as a landscape gardener, the other as a personal security and self-defence coach for a string of well-heeled clients. He plans to launch a third, more personal venture, to provide mentoring to others who have been bullied or suffer from anxiety issues following the release of his new memoir, Light In The Shadows: A Life of Epilepsy

He said: ‘As well as being on medicine to control seizures, I’m also having non-epileptic seizures, which is huge problem at the moment. When I’m in hospital they go, “Do we change his medicine or is something happening in his life that is causing it?”

‘I am currently going through tests to try and differentiate which one is triggering which, and that will dictate the next move.

‘I could potentially also have a growth in my brain, which would explain a lot, but I have always been a fighter. Whatever fate throws at me, I will carry on enjoying life nonetheless.’

Nicola Swanborough, head of external affairs at the Epilepsy Society, said: ‘It is always good to see when people with epilepsy refuse to allow the condition to limit their lives and ambitions.

‘While combat sports such as boxing and martial arts are not recommended with epilepsy, due to the risk of injuries to the head, it is important that each individual discusses their own personal risk with their doctor.

‘It is admirable that James is now using his own experiences to help others deal with some of the anxiety and stigma that can accompany epilepsy.’

For confidential support, log on to samaritans.org or call the Samaritans on 116123.

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