MATT

12 months later and there are still many questions still to answer.

Matt is a physiotherapist working with elite professional rugby teams, cyclists, triathletes, runners, and he also supported athletes in the London 2012 Olympic games. He had his first seizure in August 2020, aged 38. Matt spoke to Epilepsy Research UK about his unexpected diagnosis and how his life has been interrupted since learning he had epilepsy.

You very recently discovered you had epilepsy. How did this happen and what was your immediate reaction to the news?

I was in my bedroom when the first seizure happened in August last year. It was around 6.00 am, my son had come in for his usual cuddle and the seizure happened while he was in my arms. My wife was there to see it all. I saw my GP that afternoon, who said he would’ve sent me to A&E but decided against it because of the pressure the hospitals were under due to COVID-19.

The initial incident was followed by a cluster of seizures and I was taken by ambulance to the hospital for emergency treatment. The results for the CT scan, MRI scan, and EEGs all came back appearing normal. They ruled out a brain tumour or any vascular causes, then followed around six or seven months of trying various antiepileptic medications. Due to the pandemic, much of this investigative work and consultations were done via telephone triage. As a clinician myself, I know this approach is never quite the same as being in the room with a patient.

12 months later and there are still many questions still to answer. The cause and triggers are still unknown, and I haven’t found a medication that works effectively. The side effects from the AEDs we’ve tried so far made me irritable and stopped me from sleeping, so I came off all of them in January.

In what ways has epilepsy interrupted your life since being diagnosed?

Firstly, I’ve realised I knew relatively little about epilepsy. Like many people, I mostly associated it with photosensitivity. Through my work as a physiotherapist and playing rugby when I was younger, I had encountered the condition before. I’ve known players who have had to retire due to epilepsy and I’ve since learned that other people I was at school with have also been diagnosed. It’s certainly more common than many people realise. Despite all this, I didn’t ever really expect it would arise later in my life.

As for my own experience so far, when the seizures started, I had no idea they were happening. Now I have an aura or a strange feeling before the imminent seizure. For example, I sometimes become acutely aware of low-pitched sounds; someone nearby trimming a hedge or the extractor fan in the en-suite bathroom. There is also a pins and needles sensation in the jaw. We naturally collapse to the ground in an attempt to try and get blood back to the brain, and there have been times when I have been able to put myself in the recovery position.

In sport, we’re always pushing for those small margins; what can we learn from last season? How can we do what we’ve done better? In many ways, I think research is like this. When all added together, the small margins you fight for are what make the difference.

Why do you want to take on the London Marathon in aid of Epilepsy Research UK?

The epilepsy diagnosis came as quite a shock to me and my family, but joining #TeamERUK for the 2021 London Marathon has given this race a personal meaning and given me focus. Many people don’t know what causes their seizures, and although funds raised now may not affect the management of my condition, if we can improve things for future generations that has to be worth it.

I ran London Marathon in 2017, which I think was the hottest on record. But taking on the 2021 race feels like a bigger challenge due to my diagnosis and the time off I’ve taken. I go running with my dog, often in remote places which could also now create its own issues.

How would you describe your abilities as a runner?

I work as a physiotherapist so I’ve been used to staying fit and active. Since hanging up my rugby boots and moving out of London, I’ve done a lot more endurance racing such as ultramarathons, triathlons and sportive cycling events. The biggest challenge so far was probably the Jordan Ultra, which is a multi-day ultra-marathon covering 250 kilometres through the Wadi Rum desert in southern Jordan.

What are your hopes for the future of research into epilepsy?

It does seem that many other conditions are better understood and that more funding needs to be brought into epilepsy research. From what I’ve read, there is a growing body of evidence around epilepsy, but there are still huge areas we’re still unsure about, such as identifying the causes. If we don’t know the cause of a condition then it’s a lot harder to prevent it. We need to fill in these gaps.

It’s great that many people can take tablets to stop seizures but there are usually side effects, some of which can be a huge problem in themselves, so it’s important to reduce these. Gene therapy is another exciting and promising area of research that could stop seizures in more people.

In sport, we’re always pushing for those small margins; what can we learn from last season? How can we do what we’ve done better? In many ways, I think research is like this. When all added together, the small margins you fight for are what make the difference.

– Matt, August 2021

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