My brother died suddenly in his sleep - the pain never goes away

A man who lost his brother suddenly after a seizure in his sleep has said the pain "never really goes away".

Matt Harris, 33, from Bromsgrove, Worcestershire, had lived with seizures for nearly 20 years before he died from Sudden Unexpected Death In Epilepsy (SUDEP) in 2021.

"The sadness of it never really goes away. When we do family stuff... there's always someone missing," said his brother Pete Harris, 41.

Following his brother's death in 2021 Pete has raised more than £7,000 by completing marathons, ultramarathons and an annual fishing competition held in Matt's memory.

According to charity Young Epilepsy, SUDEP has several warning signs including uncontrolled and nocturnal sleep seizures, and affects about one in 1,000 people with epilepsy every year.

"His fits got worse towards the time he died," Pete recalled, adding: "They were typically at night, and he'd kind of wake up not knowing that they'd happened".

Matt first started having seizures when he was 14 years old, but was not diagnosed with epilepsy until five years later.

Pete emphasised that while people might know what a seizure looks like due to seeing them on television or in film, they were often not aware of what the aftermath involves.

"[Matt] often couldn't eat solid food for two or three days after because he'd normally bitten his tongue, or the inside of his mouth," Pete said.

"Employers weren't very sympathetic that he had to keep calling in sick, so he did lose a number of jobs," Pete added.

"This affected his mental health. He wanted to work, and earn, buy nice things and go on holidays, but he just couldn't do that."

Matt had moved to Wolverhampton before his death but without being able to drive was left very isolated, Pete explained.

"His friends would all be doing stuff, he'd be feeling horrendous after a fit and not really want to do anything, and kind of drifted away from friend circles."

SUDEP is when someone who has epilepsy dies suddenly and no other cause of death can be found, according to the charity SUDEP Action.

Because SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person's heart or breathing, during or following the seizure.

Symptoms of nocturnal seizures can include signs of sudden awakening with confusion, thrashing, violent movements, screaming or waking up on the floor.

While most pass without complication, they can lead to injury or - in rare cases - death.

While Matt's family had always known he could potentially lose his life as a result of his epilepsy, Pete said, they had never expected the worst to happen.

Just three weeks after his death, the family made the decision to go on a holiday they had already booked.

"The whole week we were there, there was just an empty bedroom he should have been staying in," Pete said.

"It's always quite sad at Christmas. He should be sat around the table with us. It [the pain] never really goes away."

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