Home Health My epilepsy is so sensitive that a seizure can be triggered by camera flashes or the sun shining through railings… and I can never go to a nightclub again

My epilepsy is so sensitive that a seizure can be triggered by camera flashes or the sun shining through railings… and I can never go to a nightclub again

by Alexander
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Harry was diagnosed with photosensitive epilepsy at the age of 17.

You will have heard the announcement on the television news: ‘Attention, the following report contains flash photography.’

If you thought that was a bit of a stretch, Harry Jones will tell you otherwise.

Seeing this on a screen means you have to leave the room immediately. Similarly, when Harry books tickets to a concert or goes to a club, he always checks: will there be flashing lights or photographs?

The 26-year-old from Wrexham suffers from photosensitive epilepsy, where flashing lights cause seizures. They can be strobe lights, the flash of a camera or phone, even the flickering of sunlight through trees, as well as flashing lights on television.

And even when there are warnings on television or in movie theaters, they may not be timely enough. When Harry went to see the movie The Incredibles, a warning appeared at first.

My epilepsy is so sensitive that a seizure can be

Harry was diagnosed with photosensitive epilepsy at the age of 17. “He had spasms in his arms and legs and they could last seconds or minutes, but I thought he was just tired,” he says.

Photosensitive epilepsy is one in which seizures are triggered by flashing lights. These can be strobe lights, the flash of a camera or phone, as well as flashing lights on television (stock image)

Photosensitive epilepsy is one in which seizures are triggered by flashing lights. These can be strobe lights, the flash of a camera or phone, as well as flashing lights on television (stock image)

Photosensitive epilepsy is one in which seizures are triggered by flashing lights. These can be strobe lights, the flash of a camera or phone, as well as flashing lights on television (stock image)

“I got up immediately to leave, but the flash photography had already started and I got sick immediately and had to leave,” he recalls. (Nausea may be a sign of an impending seizure.)

Epilepsy is “like an electrical short circuit in the wiring of the brain,” explains Professor John Duncan, consultant neurologist at University College London Hospitals.

“In photosensitive epilepsy, signals from flashing lights are transmitted to nerve pathways in the back of the brain, where vision is interpreted: they activate nerve cells in that area like a spark, which then triggers a seizure.”

Harry was diagnosed at 17 years old. “He had spasms in his arms and legs and they could last seconds or minutes, but I thought he was just tired,” he says.

‘Then one day I was at university and was walking up a staircase to see a theater show when I suddenly felt myself shaking and shaking. It was in a safety basket, so I was safe, but my hands went into spasms.

It took university staff 45 minutes to lower it. Harry was taken to A&E, where an EEG was performed to monitor brain activity.

Harry recalls: ‘Then a neurologist sat me down and told me I had epilepsy and had probably had it since I was born. I was shocked. Yes, I had had some spasms in the last few months, but nothing serious.

I HAD more testing to identify his triggers. During these tests, Harry had many seizures: as he himself describes, “it was torture and I was exhausted afterwards.”

Photosensitive epilepsy affects around 3 per cent of the 600,000 people in the UK who suffer from epilepsy.

Photosensitive epilepsy affects around 3 per cent of the 600,000 people in the UK who suffer from epilepsy.

Photosensitive epilepsy affects around 3 per cent of the 600,000 people in the UK who suffer from epilepsy.

Tests confirmed he had photosensitive epilepsy, which affects around 3 per cent of the 600,000 people with epilepsy in the UK.

This means you should avoid flashing and strobe lights, but also be careful in low sunlight.

‘A seizure trigger could be driving when the sun is low and there are trees along the road. This movement causes a strobe effect,” says Professor Duncan.

‘Another is when someone walks next to the railings in a park and the sun shines through them and produces a flickering light.

“If the sun is shining over the sea and the waves are flickering, that can affect it too, just like a fireworks show.”

He adds: ‘All those with a possible diagnosis of epilepsy will undergo an EEG and photosensitive tests as part of the standard protocols. They will flash lights, starting at a low frequency and increasing up to 30 per second.

Harry had never had problems with light before and had no idea what had triggered the episode at university, but following his diagnosis he was prescribed an anti-seizure medication, sodium valproate. Life then became very restricted.

Television and movies are strictly regulated to avoid frequencies that are dangerous to people with epilepsy.

“I couldn’t go dancing or going to clubs anymore because people used camera phones.” [he’s not affected by strobe lights]. I’d been there before but nothing had happened, but now I was worried it might happen,” she says.

“I couldn’t take a photo with a camera or a phone flash.”

When he graduated from college (he studied event management), “I had to wait until the end, out of 300 people, to get my degree,” he remembers.

‘I had to sit to the side with sunglasses to avoid flash photography. But even then, when it was my turn, the photographer refused not to use the flash and then I vomited. It was horrible.’

After being diagnosed, Harry went to play rugby in France in the Wheelchair Rugby League, for the North Wales Crusaders and the Wales international team.

(He had been playing wheelchair rugby league before his diagnosis, as it includes disabled and non-disabled players, but Harry is now unable to play “normal” rugby due to the risk of head contact.)

During the tournament, Harry had a seizure episode after extensive flash photography by spectators and tournament media personnel. “I passed out for brief periods and they had to inject me with a sedative to keep me under control,” he says.

Flash photography in movies or news reports is another danger, he says. ‘It’s all very well to warn viewers that there are flash photographs, but they don’t always explain how long or exactly when they will appear.

‘Sometimes you leave the room for a long time unnecessarily, while other times you think the flash is over and then it comes back. I think they need to specify exactly how long the flashes last to make them safer.’

These warnings follow guidelines issued by the then Independent Television Commission on flash photography in 1994.

As Professor Duncan explains: “Television and films are strictly regulated to avoid frequencies that are dangerous to people with epilepsy.”

But this is not necessarily the case elsewhere. ‘A few years ago there was a famous situation in Japan when an episode of the Pokémon television series had a sequence where there were flashes of dark red and dark blue at between ten and 20 flashes per second, and many children watching in Japan They suffered seizures at the same speed. at the same time.’

Professor Duncan adds that event venues, such as nightclubs, have strict regulations to avoid potentially harmful light frequencies, but at informal events, such as a barn rave, “there is a possibility of strobe lights, so that patients should be alert to that possibility.

While clubbing is something Harry can control, there are other risk factors that he can’t.

“If I’m driving and the sun is low and flickering through the trees, it would give me a seizure,” he says.

That’s why you wear polarized glasses when you drive or turn your sun visor to block the sun.

“Even a Venetian blind can cause an attack due to sunlight passing through the slats,” he says. That’s why his parents, his sister and his in-laws have taken them out of their homes.

His life has changed in other ways. “I don’t feel well in the morning because of my medication, so I had to work later, which wasn’t always attractive to employers,” she says.

Harry used to work for social services but is now out of work.

But although his condition limits his social life (Harry says he is constantly nervous, alert to any risk), his friends and his fiancée Nadine, in particular, “are very supportive.”

“Nadine was the one who encouraged me to get tested in the first place,” she says.

‘People need to understand that flashing lights can be incredibly dangerous for people with photosensitive epilepsy.

‘And they should be careful not to always use their camera flash or fancy strobes at weddings or events without thinking about it.

“It just makes it much harder for people with epilepsy to have a social life without worrying.”

epilepsy.org.uk

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