Epilepsy triggers and managing them

'Seizure triggers' are the things that make a person more likely to have a seizure, e.g. stress, alcohol and tiredness. It does not refer to the actual cause of a person's epilepsy. Every person with epilepsy is different and so are their triggers. For some, there are no specific triggers at all. Here young people talk about the different triggers to their seizures and how they manage them.

People described many different types of triggers: physical, emotional and psychological, triggers relating to medicine-taking and to lifestyle factors. Many said they tried to avoid these triggers and some had made changes to their overall lifestyle after being diagnosed with epilepsy.

Only a few people said they hadn't noticed any triggers at all and that their seizures just happened 'randomly'. Feeling helpless in trying to avoid or minimise the risk of seizures was very frustrating for many.

Physical triggers

The physical triggers that young people described included:

  • Flashing lights and strobe lights (photosensitive epilepsy)
  • Computer use
  • Tiredness and lack of sleep
  • Not eating properly
  • Exercise
  • Hot or cold temperatures
  • Loud noises
  • For women, being on their period.

Reflex epilepsy is the name of seizures which are triggered by the person's sensitivity to sensory stimuli (something that stimulates the senses). The most common is photosensitive epilepsy, rarer triggers include noises or music.

Several people said that tiredness was a definite trigger for them. One woman said that if she gets overtired, a seizure is 'guaranteed' to happen. Besides lack of sleep, irregular sleeping patterns were also a trigger for some.

Many people said they tried to avoid getting tired by not staying up late at night, studying or watching TV. Others said that if they'd been up late, they made sure they slept in the next day or, if planning to go out and stay up late, they got plenty of sleep beforehand. One woman said that if she needs to go somewhere in the morning, she makes sure she gets up early enough to avoid having to rush around. 

A few people for whom tiredness was a trigger said they had to bear this in mind with work. Some were wary of working shifts, for example.

Not eating properly was a trigger for some people. They tried to make sure that they ate regularly and healthily and, if they were planning a night out, made sure they'd eaten a proper meal beforehand.

A few people had noticed that extreme temperatures made them more likely to have a seizure. For most this was hot conditions, for example hot nightclubs and gigs or travelling in hot countries. For one woman it was cold temperatures that made her have a seizure, so she had to be extra careful in the winter.

A few people's seizures were triggered by doing sport and exercise. Some people had had seizures when playing football and rugby, whilst running or at the gym. A couple of people had their very first seizure while doing exercise. Those whose seizures were triggered by exercise said they'd become cautious about doing sport at all and one young man said he is too scared to play football anymore.

**Collapsing during exercise can be a serious sign of a heart problem and always requires immediate medical assessment.

For a couple of people, loud and unexpected noises triggered their seizures. These included loud bangs, dogs barking, rock concerts or noisy sports crowds.

For a few of the young women we spoke to, seizures were more likely to happen around the time of their period. When seizures occur around the time of menstruation, it is called catamenial epilepsy.

One woman said hormones seem to generally affect her epilepsy and noticed that her seizures became more regular and severe after she'd had a miscarriage. 

Being photosensitive

Photosensitive epilepsy means having seizures that are triggered by flashing lights, strobe lights and for some, by certain geometric shapes and patterns. About 5% of people with epilepsy are photosensitive (NHS Choices 2014).

Quite a few young people we spoke with had been diagnosed with photosensitive epilepsy. For many, flashing lights and strobe lights in night clubs and concerts could trigger seizures. Because of this, a couple of people couldn't go to clubs at all, others had found ways around this. They, for example, called the box office or the event organisers beforehand to ask if the event would have any flashing lights and if it was safe for them to go. Just closing their eyes or covering one eye when flashing lights came on also helped some.

Going to the cinema was a problem for some people who were photosensitive. Again, they would call the box office or ask friends who'd seen the film if it was OK for them to go. Some cinemas now provide a warning when showing films with flashing lights.

Working on computers, watching PowerPoint presentations or using overhead projectors in school affected many who were photosensitive. Using anti-glare screens helped some, and they all said they tried not to spend too much time on the computer and took a lot of breaks. One woman followed all the PowerPoint presentations at university from paper copies.

A couple of people, not diagnosed as photosensitive, said they'd noticed that flashing lights could still make them feel 'uncomfortable' or 'iffy'. One young woman said she sometimes got an aura from flashing lights. A couple of people also described a feeling of being 'sucked in' by the TV and feeling like they might have a seizure if they went too close to a big screen.

Psychological & emotional triggers

The psychological triggers young people talked about included school or work-related stress (including exam stress), emotional stress, being nervous or under pressure, feeling upset and being depressed.

A few people had their first seizures in, or just before, their GCSE exams. Concentrating hard on something for a long period of time was a trigger factor for a couple of people.

Emotional stress at home or in relationships was also a trigger for some people's seizures. One man said his seizures increased after he'd split up from his long-term girlfriend. One woman had more frequent seizures during the time her parents were getting divorced and home life was unsettled. Feeling nervous and upset could also trigger seizures for some.

For some people, individual trigger factors didn't affect them but a combination of a few made having a seizure very likely.

Medicine taking and lifestyle triggers

Some people said that missing their medication, irregular medicine taking, drinking alcohol, having a hangover or using recreational drugs triggered their seizures (see 'Alcohol, smoking and recreational drugs').

A few people said that missing a dose of their medication made them feel 'shaky' and likely to have a seizure. One woman described this sensation as feeling 'a bit epi'. A couple of people said they sometimes took their tablets at irregular times because taking them at set times every day was difficult to remember (see 'Medication').

Several people said alcohol triggered their seizures. Many felt they knew their own 'safe limit' with alcohol; for some this was one glass of wine, for others it was more. A couple of people said that it wasn't so much the drinking but the hangover the next day that triggered seizures.

People's approaches to drinking varied a lot. Some had decided to stop drinking completely to avoid possible seizures, others drank in moderation. A few said they didn't want to compromise on this aspect of their life and so hadn't made any changes. 

Similarly, a few people said that taking recreational drugs made them have seizures. Drinking alcohol and using recreational have particular risks for people with epilepsy (see 'Alcohol, smoking and recreational drugs'). 

Last reviewed May 2016.

Last updated May 2016.


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