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Life with epilepsy: Paul’s story


It’s Brain Injury Awareness Month, so we’re revisiting this popular article from Paul, who developed epilepsy after sustaining a head injury while surfing. In the piece, Paul discussed the impact of treatment-resistant epilepsy on his life since the accident and his participation in the UK Epilepsy Priority setting Partnership (PSP). 

How has epilepsy interrupted your life?

When I was 16, I had a serious head injury from a surfing accident. A board hit me in the temple, but I wasn't knocked unconscious so the hospital simply stitched me up and released me from their care. A few hours later, after going to bed, my dad found me having a tonic-clonic seizure. I went into a coma for a day and spent the week in hospital. But after I recovered, all was well, and I had no further seizures (that I was aware of). 

Fast forward 10 years, I was 26 and working in London as an advertising creative. The late nights, deadlines and boozy lifestyle of the industry triggered another tonic-clonic seizure. It happened at work, so I got seen in Harley Street straight away. They identified that the damaged part of my temporal lobe acquired from my surfing accident was the likely cause for the seizure.  

I was put on a cocktail of drugs, but from that point on I only went on to have focal unaware seizures about once a month but three or four focal seizures (partial seizures) each day. I'd usually have an aura and feel nauseous prior to the seizure. However, between the ages of 16-26, it’s now clear that I had frequently been experiencing brief jamais-vu seizures, which I simply thought were the impacts of a hangover. 

The medication had limited impact in seizure reduction, so I quickly realised I could only control the seizures through changes to my lifestyle, namely leaving the pressures of the advertising industry and stopping drinking. This meant that I had to distance myself from my then group of friends, as I felt uncomfortable socialising with people when they were drinking. I also had to leave my flatmates because I had to prioritise my sleep and it was a noisy, party flat. This inevitably led to social isolation and a decline in my mental health. 

So, I completely changed career, moved to Edinburgh to form a new social circle and I'm now an award-winning youth worker. This included being employed by Epilepsy Scotland as a youth worker and a guest speaker for the Neurological Alliance and Napier University nursing degree.

Investigation into the causes of drug-resistant (refractory) epilepsy and new treatments was established as a research priority by the UK Epilepsy PS. What does this priority mean for you? 
Empowerment, because a sense that something might help in the future. Whilst I've been offered further brain surgery to remove the small bits of damaged brain tissue which was missed on the first try, the anxiety caused by the invasive procedure and the risks outweigh simply opting to use anti-seizure medications and then coping with the negative, all-pervasive impact of living with epilepsy.  

What are your hopes for future research into epilepsy?

I hope that future research will provide more medications that work for me and others. As I understand it now, for someone who has refractory epilepsy, there was only ever a 1% to 4% chance of any new medication working on my seizures. It’s clear that further research is required, which is why I was happy that refractory epilepsy was included in the UK Epilepsy PSP Top Ten priorities for research. It has given me a sense of empowerment as it provides hope that something might help in the future.