My friend told me they didn’t like how I’d become and it changed everything

After a relatively normal evening at home – having dinner and watching TV – everything felt fine and there were absolutely no warning signs. Then I went to bed and had a random seizure in my sleep.

I don’t remember much about the next 24 hours in A&E, other than the fact my parents (who lived 100 miles away) and my wife were standing next to my bed in a London hospital, while my body felt like it had been beaten to a pulp.

All my muscles ached, my head was pounding, and I had taken a chunk out of the side of my tongue when I had bitten down on it. I felt scared, confused, vulnerable, and exhausted.

After a full day in the hospital and no results on any of my tests, I was discharged and referred to a specialist epilepsy clinic.

At that stage, I wasn’t sure what was worse: The pain of the seizure, the lack of answers, or the impending visit to a neurological specialist. So I tried not to think too much about it.

In the year or so that followed, I’d wait months for consultant appointments and scans – like EEGs or MRIs. 

In the meantime, I was working and partying harder than ever. When asked about my seizure, I laughed it off and made all the jokes I could think of – mainly as a defence mechanism.

Unfortunately, my seizures became a regular event, happening every couple of months. Along with that came increased anxiety due to the fear of not knowing when they were going to happen.

I also had to hand back my driver’s licence, which made me feel like I was a burden on my family and more reliant on others than ever. 

About a year after my first seizure, I had an appointment with a consultant who was very direct and quite blunt. When I was told I had epilepsy, I immediately felt quite numb and in denial. I was then prescribed an anti-epileptic drug to try to control my seizures.

Shortly after my diagnosis, I was admitted to the Chalfont Centre and Gowers Unit for overnight tests and neuropsychological assessments. At first I was nervous, but this soon turned to sadness.

During that stay, I saw others with more severe epilepsy than mine. Some were in wheelchairs, while others had seizures in bed. Imposter syndrome kicked in – surely I didn’t need to be there… I was healthy. Looking back, this was clearly denial.

This experience in 2012 should’ve made me feel fortunate that it wasn’t as bad for me. Instead, it was the beginning of a spiral of depression, alcoholism, debt, and suicidal thoughts.

For the next few years, I’d have seizures every couple of months – at Tube stations, on the train, and in the office. Sometimes I was taken to hospital and other times I’d be kept safe until I was able to get home. I never knew when or where they’d come from.

As a result, my emotions were never balanced. I felt like a fraud in every element of my life, that I was no longer good enough for anyone, and that I had nothing to offer as a father, husband, friend, or employee.

It was the beginning of a spiral of depression, alcoholism, debt, and suicidal thoughts

I felt more of a burden. I thought to myself that maybe I would be better off dead, so I began pushing everyone away.

At my worst, I felt so despondent that I would often just walk around London alone until 5am, waiting for the office to open or the first train home.

Thankfully, some of those closest to me stood by me. They weren’t afraid to tell me the truth about my behaviour, no matter how much it hurt. 

One of my closest friends took me for dinner and told me straight that I needed to change and that those around me didn’t like how I had become, but they still wanted to help. 

So in 2016, I went to my GP and asked for help. I truly think that was the first time I cried about everything. It all just came out.

Thankfully, things have improved a lot since then. But I still don’t have medication that properly controls my seizures.

I have tried six different medications over the past 12 years – all with quite noticeable side effects, ranging from mood swings, lethargy, memory loss, slurred and slow speech, and inability to think of words.

As a result, I agreed with my consultant in 2020 to consider brain surgery and undergo the initial testing. But my wife thought I should try a more holistic approach first, including exercise – specifically running. Some doctors agreed.

So I embraced running as a hobby, which has become a stress reliever and a lifeline. Things have continued to look up since then. 

During one marathon, I suffered a seizure at mile 14. I felt an aura, which is a fuzzy feeling I get before a seizure. I was scared, unable to speak, and wet myself, but after I did the only thing I knew and just kept running! 

I passed my wife at mile 17, and she immediately knew what had happened, but she realised that trying to convince me to stop was impossible. I needed to finish the race, and once I did, I burst into tears.

Sometimes, epilepsy can also stop my running literally in its tracks. 

This year, I undertook the challenge of a 258-mile bike ride from Hampshire to Manchester for the marathon there. 

The Saturday bike ride went well, but the final stage of the journey wasn’t to be. On Sunday morning at 5am, I had a seizure. I knew that this challenge was over, and I felt like a failure.  

But I won’t let it stop me. I’m already focussing on the next challenge to raise money for the Epilepsy Society in 2025.  

But next year needs to be bigger, so the team that cycled to Manchester with me are currently discussing a London to Paris cycle in 24 hours to run the Paris marathon.

So the future I see may not be an easier one. If anything, it feels scarier. 

Will I need surgery? Will my memory loss continue? What medication is next? Will my body stop? Who knows. 

But what I do know is that I’m doing what I enjoy, surrounded by the people I love, and focusing on the things that matter.

Going through what I did with my mental health, I want to highlight to others that you need to face your problems head-on. My seizures and diagnosis came on without warning, which was a massive upheaval of my life.

As a result, I pretended like it wasn’t happening by working or partying harder. But you need to talk about it and find outlets like exercise to help manage it.

Epilepsy is more than a seizure. It’s things like memory loss, anxiety, fear, loss of confidence and independence.

If something like running can help you deal with that, I couldn’t recommend it enough.

Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk. 

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