Epilepsy in Young People
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.
Since Maria was diagnosed with epilepsy, she has changed a lot of things in her life and adopted ...
Can you, maybe tell me a bit more about the routine that you have in your life? What is your daily or weekly routine?
Well the main thing is getting enough sleep. So, I always go to bed probably between eleven and eleven thirty. And then I always get up at 8, or sometimes a bit later, maybe nine if I'm having a lie in, feeling a bit crazy [laughs]. I try and eat healthily because the medication I'm on can affect my immune system. So just try to be healthy, not drinking, certainly not doing any illegal recreational drugs, going out very rarely and only when I feel well, and only when I know that I've had a week where I've had plenty of sleep, but also not too much sleep because that can also cause seizures. And also because if you have too much of a lie in then you're not gonna want to go to bed early that night, blah, blah, blah, always thinking am I going to be able to get home on my own tonight. If I do just go out to the pub with my friends, before they go out to a night club or something. Will I have to go and get a taxi, can I afford a taxi? If I get the bus is it gonna be safe for me to walk home from the bus? Taking all these things into consideration thinking, well can I really afford to go to that party because I know I have to get up early in the morning, but then if I don't go, then that person's gonna think I don't like them, they're gonna take it really personally, so it's fairly rigid and. This summer I'm going to America and I'm already thinking hang on I need to work out what the time difference is gonna be, because I can't take my medication at different times. Does that mean that I'm gonna have to wake up in the middle of the night to take my medication, but then what if I can't get back to sleep? And that means I'm not gonna have enough sleep, and then what about on the plane, what do I do blah, blah, blah? So, it's frustrating, and it's not the end of the world, by any means and it could be an awful lot worse, but, because I'm a young person and I'm at university I can't lead the life of other students my age, and that's difficult.
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.
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
- 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.
Holly describes having a seizure in a seminar presentation abroad. The main triggers were jetlag...
One of the problems about going abroad was that I just had the most horrific jetlag, the problem was jetlag. , everybody says that when I got there that I should stay awake for as long as possible because then I would sleep right through. But instead I stayed up late and then I woke up at half past six UK time, because that’s the time I would wake up every morning, so I had like an hours sleep and then I went straight into the conference the next day, and sat through, well conference can be quite tiring, meeting all those people, pretending to like them and be polite and al you know, feign interest in their topics you know or whatever, and then we went out that night, ‘cos we were away so we were totally going to be making the most of it, and that night, you know so, you again I thought well I’ll just use the same philosophy, I’ll just stay awake as long as I can, so I stayed up until gone midnight there and then I woke up at half past six in the UK, so I had another hour and a half’s sleep, or something like that.
So yeah by the second day, third day, that I was away, anyway I’d had like 2 hours sleep or something insane like that and then that morning I had to do my paper, which you know is not exactly relaxing, so I’d had no sleep and I was exhausted, and I didn’t have Elvis, and so I was stressed because I didn’t have Elvis, and because I was tired do you know what I mean? And everything just added together and so I did my paper, I was half way through this is what I’ve said, on the stage behind the lectern, and then I went down, and my friends ran towards me to help, luckily I was in a hospital already ‘cos that’s where the conference was, so that was handy, , but nobody listened to my friends saying give her ten minutes to see if she can just come out of it herself, , anyway I ended up in A&E, and then you get charged for the privilege, you know they held me hostage, you know they did tests that they really didn’t need to be doing, , you know, yeah getting doctors to come and see me who I said I didn’t really need to see, and wouldn’t let me go, and yeah then they charge you for it. I was not impressed, anyway, but yeah that was that.
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.
Ben says he's trying to improve his overall lifestyle, eat healthily and get enough sleep. He...
Rania follows the GI diet which she feels helps both with her epilepsy and ADHD. This includes...
Are you on the diet particularly because of epilepsy?
Well it helps but I found that it also helps with the ADHD as well, and, yes just that really [laughs].
Can you tell me more about the diet? What it involves? What you eat, what you don't eat?
It's things like substituting things like, you substitute white breads and pastas and that for wholemeal, and you balance out the protein and the carbohydrates and vegetables and that. They're advertising it a lot now on TV and that, by, and they use colour charts, red, yellow and green.
And how long have you been on this diet?
For almost a year now.
And you've noticed a difference?
In what way?
Well, it stabilises the blood sugar levels because I have to have a kit to make sure that they're okay every so often. Yeah, and, basically, the decrease in caffeine helps me sleep and that. Yeah and there's not so much processed food in my diet.
So no artificial things and preservatives in the food?
Do you find it difficult to follow that diet?
Sometimes. But it's not that hard really. Yeah because most places now are sort of advertising it everywhere and all the celebrities are following it now, so that helps.
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.
Clair used to be really sporty but after having a few seizures while exercising she has stopped...
**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.
Dave's main trigger is loud unexpected noises. Football crowds and the tube can be tricky for him...
There's so many people, well it's 60,000 at the stadium now, you now and on the train the crowd can get you know, there's a lot of people, and they can easily bump into you if you're not expecting it, and that can set you off so, I'm always making sure that I'm close to mum and dad there as well so they've, they can look at me and, so that you know I don't get a seizure sort of thing. But that's when it, another symptom that could be you know if someone bumped into me so'
Yeah, so crowds.
Yeah, crowds I'll have to watch out for, on the tube, it's not just the, football, it's if I go to a hospital appointment.
Okay. On the tube?
Yeah on the tube. Yeah the, the train I go isn't too bad, but it's mainly the tube.
And would you go on your own? Would you take public transport on your own?
For a long while since, I haven't been and dunno why, it's just started happening lately but I haven't been too confident lately to go by myself. You know if something just happens that makes you think ooh don't, I don't know what it was but something set me off, getting very nervous about going on transport on my own, but, you know I did used to do it a lot, you know, but now I've, something set off. I'm a bit nervous to get, to get on, you know I feel a bit unprotected when I'm by myself sort of thing. I survive and I grit my teeth through most of it, so I just do that you know, listen to my music so that I'm in my own element sort of thing, you know so that I can just. Yeah I just listen to my to my music so it gives me something to think about you know like the music. I can get lost in the music so I don't have to worry about all the people around me.
Is that useful for you?
The music? Yes, I find it very useful, listen to a lot of rock music so it's very useful, like I can get lost in it, and you know I don't feel so worried then.
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.
Because Becky is more likely to have seizures during her period, her doctor advised her to...
Do you plan things like around the time of the day that, you wouldn't have anything important in the morning, or you would not travel around your period time, or do anything that would put you at more risk?
Not so much any more because now I tri-cycle my pill. So I don't have a period very often which was advised by my doctor, she sort of said to me you know if, they said to me if you were, if that's the risk, you know, if the risk is that you know it's more likely when you're on your period, just tri-cycle your pill, so you only have a period every three months, less risk of a seizure, makes perfect sense I suppose.
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.
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.
When Ashlea goes clubbing and flashing lights come on, she and her friends all cover one eye so...
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.
Bex's photosensitive epilepsy is triggered by different lighting conditions, strobe lights and...
For me, mainly because it is photosensitive, it is anything to do with light really, which can be you know a big problem. Artificial lighting or so, anything outdoors is okay, but if I don't eat well, or don't sleep too well, then that can be that can be a problem or get too stressed. Sometimes I find, because I have my myoclonic seizures I sort of space out a lot in the day which obviously would stop my driving, because I have been seizure free with the grand mal seizures for many years. So it is only really that keeping me from doing anything, but you know I don't have as many, I suppose I don't notice the trigger factors now, because I sort of look after my lifestyle and if you if you look after your lifestyle and then look at your trigger factors then you do lead a pretty normal life.
Sometimes I'll call the people up at the cinema. Or I will ask people if they have seen it. A lot of people know now what sort of lights will trigger me off. So I do have to be very careful who I ask, you know, but a lot of people be like oh you'll be fine, but some people are very careful and they'll say oh don't go to that one. But they will, you know, recommend a certain film. And you know it's again being wise on who you trust. Sometimes although your friend is a friend, you do have to be wise on who you who you do trust and who you tell. You know, you might tell all your friends about the epilepsy and they might all accept but only one or two might be able to deal with it. It is just the way people are. So it is only ever one or two people that I ever go to for things like that I just sort of say, you know, which film shall I pick and you know and they they're quite wise to know what triggers me off type thing.
Computer is if I turn the brightness down that helps a bit, and sometimes I wear my sunglasses which make me look weird in winter [laughs], but sometimes I am okay for a while. And other times I really can't use it at all. But I am okay for a limited amount of time, a few hours. It's hard at university sometimes, when everything is on line or on Power Point so it means you know I either use one or other type thing, but it is not so bad. It's awkward, but you know it is better if I have a laptop than you know a computer screen.
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.
Charli describes the sensation of being 'sucked in' when she goes too close to a TV 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 hectic time at work and not getting enough sleep gave Morven bad seizures. She took some time...
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.
Concentrating on specific hand movements when drawing or playing the guitar is the main trigger...
Okay, so concentrating on something is a trigger?
Yeah, that's I think, I think it's always a form of stress, like whether it be, like lights or actual like panic or and mine is just that concentration, and I can see it a, I can't remember if there's two types, there's two types of fits, one which starts from a point and spreads everywhere, and one like just happens everywhere at once. If I'm like say drawing, that's that shake I can, it's you can see it like spreading from my hand to the rest of my body, and it's that point of concentration, but, yeah I've only, it's only that one time that I've ever hurt myself so. I've been quite lucky.
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.
For Nick, the combination of stress, heat and hunger triggers seizures and he tries to avoid them.
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.
Alcohol triggers Paddy's seizures so makes sure he sleeps and eats well before going out and doesn't go out two nights in a row.
Well it does, like the way I, the way I sort of think about it is, just a sort of like a limit, like a sort of a threshold where if I go below, I then I could have a fit and I think like everyone's got that threshold but if you're epileptic it's sort of naturally lower. And, mine is sort of lowered by drinking, not sleeping, not eating, so if I am gonna be going out drinking I just make sure that I sleep and eat, I just make sure that I basically lie in bed the next day, which is not a hard thing to force myself to do [laughs]. But yeah I'm just I think of it like overall and I try to balance everything. I do have to stop myself if it's too many like consecutive nights, 'cos I can't. I need to rest and recover as like some people will say that I just like power through, or decide to keep yourself up, but I know, I know that I'm not, it's just not a, it's not something that I can decide about, I have to go back and rest up after a certain while. But for a one off nights it doesn't affect me.
After a couple of nasty experiences of having seizures when drunk, Carole has decided to only...
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').
For Matt, the come-down from taking Ecstasy and other pills 'guaranteed' a seizure the next day.
Last time Al had a major seizure he was very drunk, had been taking recreational drugs and had...
I was just so drunk that, and numb that it just happened, you know? I was feeling like a prickly sensation, yeah I was, and I was going to, I went and told the, the first member of staff that I could find that I was gonna have a seizure could she get me to the First Aid. But like I went to the First Aid and I woke up and I was in an ambulance at the port, and, you know, friends had stayed [laughs] and were like, 'Shit what have you done? What were you doing last night?' [laughs] 'Stupid'.
Last reviewed May 2016.
Last updated May 2016.