A-Z

Epilepsy in Young People

Experiences of different seizures and auras

Seizures occur when the brain's normal electrical activity is disrupted. Generally speaking, seizures occur when brain cells are 'over-excited'. There are many different types of seizure, depending on the area of the brain affected. The disruption can affect a part of the brain (partial/focal seizures) or the whole of the brain (generalised seizures). People with epilepsy can experience any type of seizure, although most people have a regular pattern of symptoms.

Here young people talk about their experiences of seizures. Most felt that people are generally unaware of the many different types of seizures there are and felt it was important that other people knew more about the full range of epilepsy.

 
Text onlyRead below

Bex points out that epilepsy is different in every person who has it.

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 13
HIDE TEXT
PRINT TRANSCRIPT
Do you think that is important for people to realise that epilepsy is so different in every individual case?

Yeah. I think so. And I think a lot of medical advice I think should realise that. I think sometimes you know it could be overlooked, but it's different in each person. I think sometimes you can be put in a category if you've got that type of epilepsy then these are the trigger factors or whatever. But it's different in each person and each person's lifestyle is different isn't it.

 
Text onlyRead below

People don't know about the 'full range of epilepsy' says Helen. She found hardly any information...

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 22
HIDE TEXT
PRINT TRANSCRIPT
Definitely the fact that people don't know about the full range for epilepsy. It's not something that I was ever taught in the school. It's not something I ever knew about. That's why I wasn't diagnosed until last year, because I didn't know that this form of epilepsy existed. I never met anyone with it, although I know that there are a lot of people out there with my form of epilepsy. It's something that people just don't know about. It's something that, when I search on the internet, I didn't you know when I searched on the internet and tried to find out more about it I could barely find anything.

Partial (Focal) Seizures:

Auras
An aura - often called a warning - is a sensation which some people get just before they have a seizure. An aura is actually a simple partial seizure (see below) and can happen on its own, without progressing into another seizure.

Most people we spoke with had had auras. Many said they had an aura a few seconds before a seizure, just in time to get themselves somewhere safe, lie or sit down and warn others around them.

People described the sensation of an aura in different ways; feeling 'light-headed', 'funny' or 'unwell' and 'sick'. One woman described her auras as feeling 'away with the fairies'. 

 

When Francesca has an aura, she feels like Alice in Wonderland, she herself feels tiny and...

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
For me it starts with an aura in which everything becomes really huge and I sort of feel really really small, almost a sort of Alice in Wonderland type effect. And then really the next thing I know is coming round. I have no idea what happens in between that feeling and coming round. But I think to the general public it just looks like a faint that is really all I can describe it as.

Can you describe more about the aura?

Actually you sort of go through a range of emotions. I don't think it lasts for any longer than may be 30 seconds itself as well, but at first you sort of feel very frightened and you think, oh what is happening because it is all visual. And then you sort of feel slightly calm and a bit surreal almost and then you sort of think, well okay I am accepting it now, I know what is going to happen. I know what is coming next and that is really it. But it is a really strange experience and I remember the first time it ever happening was really scary and I was like what is going on? But it is, objects becoming bigger than you, being really large and you just feel yourself like you are really, really tiny.

And do you tell somebody when it happens?

No because usually by that point I have already sort of lost the ability to warn anybody but I think some people can tell, because I will just be like sitting there or standing there, but as far as actually like sort of communicating what is going to happen next it doesn't happen.

A few people described their auras as 'hand movements' or 'twitches'. Some also described feeling frightened when having an aura and one young man compared his aura to an anxiety attack.

A few people said they'd never had an aura. This also meant they didn't know when they were going to have a seizure and couldn't get themselves somewhere safe beforehand. One man said that, even though he doesn't have auras, people close to him have learnt to recognise the signs that he is about to have a seizure. One woman said she simply doesn't know if she has auras or not, because she loses her memory for a while before a seizure.

For a couple of people the experience of auras had changed over the years.

 

Archie had auras for five years before he had his first tonic-clonic seizure. When he has an aura...

View full profile
Age at interview: 16
Sex: Male
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT

I've always been feeling light headed and faint ever since I was about 5, and I've never had a seizure, I never had a seizure then, and I've only just started getting them but I've always had auras since I was about five. The first one was at a birthday party, and I think my parents were just coming to pick me up and I felt like really faint and sick and I had to go and sit down. Then the next one I think, I can't really remember the next one, but that was the first one though that I started to have.

Yeah, so it was just the aura but it wouldn't sort of lead to anything?

No.

What did you understand about it 'cos you were so young, so little, 5 or 6, what did you think was going on?

I just really just felt sick and really just awful really, it was unpleasant really.

So you knew it was something else, or did you, that there was something different about it?

I didn't really know at the time. I just thought it was just being sick really, just feeling sick and faint and it wasn't just feeling sick and faint; it was a combination, it was feeling light headed and sick.

 

Two years after her diagnosis, Becky started having auras; a pain on the bridge of her nose. Her...

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
My epilepsy, the only thing that has ever really changed, my triggers have never changed, the only thing that's ever changed is that obviously when you're first diagnosed with epilepsy they always ask you if you have any warnings. They always say, 'Oh did you feel anything coming on, did you feel any warnings at all?' And I never ever had any warnings, ever, I think until I was about two three years into my diagnosis, and all of a sudden, just completely out of the blue, I just started to get warnings across the bridge of my nose, just before I'd have a seizure. I think the first time I ever had one I'd been out with a friend the night before you know just on a night out with the girls. A friend had stayed around my house and we'd got up the next morning and we were sat in my bedroom and I just remember sort of saying, 'Oh, you know I've got a real bad pain across here. I feel like I'm gonna be ill.' And then I had a seizure, and from then on just whenever I was gonna have a seizure, or the majority of the time I would always get just a real bad sort of ache right across here. And even if I didn't notice myself doing it, people would always say to me afterwards, just before you had your seizure you would put your hand up and go like this. So even if I didn't click myself that I had done it, people would say yeah, you went you went like this before. So that was odd and that was something obviously I had to mention because obviously whenever you, there is a change in anything to do with your epilepsy you should always mention, so that was something I had to mention. They just said, you know the doctors in the hospitals and things like that because I've had several different hospitals like when I went to Uni I had a different hospital in a different part of the country and they all just said the same thing, just that it changes with age, a lot of people grow out of their epilepsy, a lot of people's epilepsy gets worse, and they just said that mine's just changing with age.

One young man who'd had brain surgery said his auras had become 'stronger' after surgery. Another, who was otherwise seizure-free, said he still experiences the occasional aura.

Simple partial seizures
In a simple partial seizure the person remains fully conscious but gets unusual sensations of taste, smell, emotions, and twitches and jerks. Auras are also simple partial seizures.

A few people experienced simple partial seizures with involuntary arm jerks or twitches, déjà vu-sensations or a 'funny feeling' in the stomach and their 'legs going'.

 
Text onlyRead below

Helen compares the experience of simple partial seizure to being on a roller coaster and she gets...

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 22
HIDE TEXT
PRINT TRANSCRIPT
I've simple and complex partial seizures of the temporal lobe. The kind of seizures that I have, they are very hard to describe. I always describe it as being on a kind of roller coaster. And you're kind of strapped in and you can feel the tension as you know it's gonna happen, you know that it's gonna be scary. And then you know when you're going up the roller coaster and you get that feeling in your stomach and that's actually gastric uprising which is part of the seizure. And in addition to that I kind of get a very very strong feeling of d'j' vu like I know that maybe I'll see something and I'll know that I've seen it before. But I won't necessarily have seen it before because that's just actually just connections in my brain not working perfectly well. So I get to that point where I feel like I'm at the top of the roller coaster and I'm just about to go down and I can see everything below me as though I'm not really there, as though I'm just a third person as I'm floating above my own head. And then all of sudden I'll go whish, I'll be down, round and round and round and it's really terrifying and then they'll stop and I just feel really just weak and trembly and that's what a simple partial seizure is like.

Well I used to have seizures anything between, I always had at least one a day but I used to have anything up to six to eight which you know a lot of people have more. Now I'm on the medication I just don't have them and if I do, it's a bit strange, sometimes I'll be aware that without the medication I would be having a seizure so I'll get a hint of d'j' vu. It's strange because obviously the seizures that you have, okay they are either brought on my stress, but any one event shouldn't bring on seizures. With me, if I walk down the same piece of road every day and I happen to have a seizure on that on that stretch of road, then when I go back there I have a d'j' vu of going there before and then I'll have another seizure. Well, there is a certain stretch of road in [town name] where I used to live, where if I go down that stretch of road I'll get d'j' vu and even if I'm on medication which I'm because I'm walking down there I would still get a twinge of d'j' vu, so on the meds, because even d'j' vus count as seizures.

 

When Dave has a simple partial seizure his arms shoots up, eye wanders and sometimes this happens...

View full profile
Age at interview: 24
Sex: Male
Age at diagnosis: 12
SHOW TEXT VERSION
PRINT TRANSCRIPT
I've had all the partial seizures where my arm shoots up and eye wanders and I feel very shaky for a couple of minutes, sometimes it rumbles or sometimes it's just quick like that sort of thing.

They can be once or twice a week. Normally I can go a week without it, but what they basically are, like I said the main one is my arm shoots up and my eye wanders and I'll get very shaky. Or sometimes another sort I have is when it rumbles, after I have it and then it rumbles. Kind of like hiccups, you know. But with seizures, my arm can shoot up, shoot up, shoot up, shoot up sort of thing you know. So those are the kinds that I have, or what they're like.

Yeah, and that's over in a few seconds you said?

Yes, most of the time. I mean there's, like I said, some that rumble, but the hiccup style do start and are over in a minute, but then they rumble, literally like hiccups, but with seizures you know.

Yeah, that's a good way of describing it for someone who doesn't know.

Yeah, yeah.

And do you then just carry on with what you were doing or do they have a physical effect on you?

I always try and carry on, but I always do have to wait until it's gone. Sometimes I might actually do it when I'm not completely done, but I do try and get on with life you know if I've had one. I do just try and sit it or you know wait it out and then get on with what I'm doing.

Complex partial seizures
In a complex partial seizure a person's consciousness is altered and they may not remember all of what happened. They may show confused behaviour and 'automatisms' such as lip-smacking, chewing, undressing, picking up objects and wandering aimlessly. The seizure usually lasts a few minutes and to people watching it may seem that the person is fully aware of what they are doing.

 

Helen describes a complex partial seizure she had at the fruit counter of the supermarket.

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 22
SHOW TEXT VERSION
PRINT TRANSCRIPT
A complex partial is a bit more difficult to describe because a complex partial seizure you don't really remember it much at all. I think the most interesting one I've had of those was when I was about to go into a supermarket I had one and I don't entirely know what happened, but the next thing I know I'm walking home with bags full of shopping and I had three melons, seven lemons, a whole load of Mexican food and oh yes, black hair dye [laughing]. I don't know why I just did and I think I must have been quite confused, but I have a vague memory and I'm not sure if it really happened, but I think I stood by the fruit kind of area and looked at a lady, and said Helen - melon until she gave me melons and then I did the same by the lemon counter, I went Helen - lemon. And maybe people hand me lemons and I don't know why I did it, but that's what it's like, you know you get a bit confused and you don't know what's happening.

Complex partial seizures often originate in the temporal lobe of the brain which is called temporal lobe epilepsy. One woman explained that sometimes her seizures cross over from the temporal lobe to other parts of the brain. When she has complex partial seizures, her limbs shake and jerk.

Some people we spoke with had had complex partial seizures several times a week, others twice a year and a few were now seizure-free.

 

At her worst, Donna had fifty complex partial seizures a month and injured herself many times.

View full profile
Age at interview: 28
Sex: Female
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
I wrote it all down in here and some months I had you know 40, 50 fits in one month. I was told I've got temporal lobe epilepsy, which is very quick, you don't get any warning as such. One minute you're alright, and the next minute I could be, if I was stood up, I'd be on the floor. I didn't know who was around me, what I was saying, what I was doing, very dangerous really I mean, I've fell against things, I've fell against windows, at one stage I was going to the doctors to pick up a prescription, the next thing I knew my husband was coming to pick me up. 'Cos they'd phoned him, and I'd fell outside the pub, which is quite funny really, 'cos they maybe just thought I was drunk, but I wasn't. I've got a big scar down my back from where I fell onto a corner unit, I was only upstairs, my husband was downstairs, and all he heard was 'clunk' and I fell right, right down, and I've got a big, big scar on my back. 

But through all the years of having it, 25 years, I never did myself any serious damage, which is good. I could've done. I always say, it might sound daft, but I always say I think somebody, something or somebody was protecting me, it's like's your body just knows, it's strange. I mean again I've never been really drunk but when you're drunk you don't feel things, when you have a fit, I didn't feel anything, didn't feel no pain, until afterwards. I come round, and it took me half an hour or so to just think, 'Where am I?' sort of thing, and then my husband, or my parents would say, 'Oh, this is what's happened, that's what's happened.'

Many people found complex partial seizures very unpleasant and scary. Often, they hadn't realised it was an epileptic seizure until they were diagnosed. One woman fell out with her housemates after she'd been 'running around screaming' in the house. She only realised later that she'd had a complex partial seizure.

 

Maria gets a feeling of déja vu in a complex partial seizure and she feels like her 'insides turn upside down'. She had no idea this could be an epileptic seizure.

View full profile
Age at interview: 19
Sex: Female
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT

I don't remember the very first one, but I remember one of the first ones. I was in my university halls, I was in my flat, and I think it was that day, the one I remember, and I was just sat at the kitchen table, and, sort of got this feeling of, someone said something and I just got this sort of feeling, “Oh, I'm sure they've said before.” Actually I'm sure I've been in this exact situation before. And I image people kind of get that feeling all the time, but then I suddenly felt that I didn't have a clue where I was, but I knew that I knew where I was but I felt that I didn't know where I was. Then, I felt like I couldn't control my limbs, I felt like sort of my body almost became, almost because a dead weight. It felt like my insides sort of turned literally upside down, and this feeling like I was just going to die, and this sort of weird, this is the bit that's really hard to explain because I don't really remember afterwards… but I remember sometimes, and also because apparently while it's happening I tell people, but I don't remember what I said, I sort of get, kind of a vision almost, almost hallucinates. The things I see are always really terrifying. And I feel very afraid and like I want someone to help me, and just this really sinister feeling. Then, very suddenly my sort of insides turn the right way up again and I feel like I'm coming out of it. My heart beats very very fast, and I feel very aware and very awake, and then it stops and the whole thing lasted about two minutes. I thought, “Well, that's weird.” [laughs].

I just assumed it was something psychosomatic, and when I was younger I used to get really terrible headaches when I was stressed or nervous and I thought maybe this, maybe that's developed into this. The thing I was focussing on wasn't so much the things I was seeing in my head, it was more the sort of the physical sensations and I think if you are stressed your mind can be very powerful and can cause horrible physical side effects. So I just blamed it on that, and thought it was a bit weird and got on with my day. And it happened a couple more times and I thought that's a bit strange, never mind get on with my day, and I don't remember the next time it happened, but I think, between then and when I was diagnosed it happened roughly every two months or so. It was quite regular, and it would happen between say 8 and 15 times over twenty four hours, which I didn't think was very often. I thought once every two months, that's not very often but when I saw the neurologist for the first time he said, “Actually that's quite a lot. That's more than most people.” But I really didn't have a clue. So yeah the first time I didn't have the vaguest idea that it could possibly be an epileptic seizure.

After a complex partial seizure, people described feeling tired, light-headed or dizzy. Most didn't remember anything that had happened during the seizure but a couple of people felt they'd been aware of some of their thoughts during the seizure. Some people had injured themselves in a complex partial seizure if they'd knocked their head or tripped over and fallen down the stairs.

Many people felt that generally most people don't understand what complex partial seizures are and even that they are a type of epilepsy.

Generalised Seizures:

Absence seizures

Absence seizures are generalised seizures in which the person briefly loses awareness and appears to switch off. Sometimes their eyes flicker. These used to be called 'Petit Mal' seizures. Absence seizures usually last for just a few seconds.

Several people we talked to experienced absences and described them as 'black outs', 'day dreaming', 'blanks', a feeling of 'suspended animation', 'looking at stars', 'zoning out', being 'frozen' or feeling like they're in a 'trance'.

 

Anna describes absence seizures as 'frames in a film' where some frames are 'cut out and the rest...

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 11
SHOW TEXT VERSION
PRINT TRANSCRIPT
The only way I've ever been able to sort of trying to explain to other people, it's a bit like kind of frames in a film, that if you could cut some out, and stuck the bits back together again, that's how I perceive it. I don't register it like a gap or I don't sort of go into my own thoughts, it's just a jump in my reality. When it was, when I was worse and I wasn't sort of as well medicated as I am now, I could sort of be out for kind of three, four, five seconds, which was quite difficult, and then because the jump was more noticeable, I would feel more disorientated. As I've got older I'm sort of both having shorter seizures which makes it a bit easier 'cos I can generally work out what's going on, and also I cope better, I can guess what I might have been saying, or I can kind of pick up from conversations, and so my perception of it is, everything is kind of just a bit shifted. I think it's difficult for other people because their perception of me when I do it, is I've been told that I roll my eyes up, and I tend to look like I'm kind of daydreaming, 'cos I think I do that when I'm not seizuring anyway. I say 'um' and try and remember what I'm saying, and it just looks like I've kind of lost what I'm thinking about, and if I know people quite well and they know that hose are the kind of indicators that I'm having a seizure, so they generally tend to be better at noticing when I have a seizure than I do. Which is nice when you've known someone for long enough that they can, they don't wait to be told that you've had a seizure, they just kind of recap what's going on.

 

For Finlay, absences feel like moments of 'freezing'. He feels confused afterwards and calls this...

View full profile
Age at interview: 21
Sex: Male
Age at diagnosis: 11
SHOW TEXT VERSION
PRINT TRANSCRIPT
I was very into this game called Championship Manager, it was a football game where you manage, you manage a football team. It's one of these games where it progresses, you save it, and it progresses over years at a time, but obviously it sped up. So like three or four hours would be like a season perhaps, and I was just so engrossed in this game and I would play it with my brother, and he would watch me. I think that he noticed but, because he would say things during it, and I wouldn't respond and he was you know three years younger than me so he was even less aware of what was going on. He thought I was being moody perhaps and I remember I would just be playing it and then as soon as I relaxed and then just kind of freeze and I wasn't thinking, it was this kind of stage where I just, I wasn't analysing how I was feeling I was just frozen. I was just like, hmm, and I would just watch it and I was very still, very serene, after I came out of that I would always be like, 'Sorry what?' And I would be like stupid for about an hour after that.' That's how I would describe my little stupid phase, and because I never felt any particular panic, I would just, I never really raised the alarm. I think I'd probably still do the same if I was that age again, you know, it just didn't occur to me that I should say anything really. And it wasn't that I was scared of what people would think, it was just that I didn't think it was a problem, I was like, 'It's fine.'

A few people experienced several absence seizures a day, for others they were much less frequent. A couple of people had no idea when and how often they had an absence because they themselves weren't aware of them. One woman had only absence seizures, but all the others who had absences experienced other seizure types as well.

The biggest effect absence seizures had on people's lives was on their (school) work. Having several absence seizures in class meant they missed out chunks of lessons. Quite often, teachers hadn't realised that the person was in fact having a seizure in class until they were diagnosed.

 

Gemma describes what happens when she has an absence in the middle of conversation and how...

View full profile
Age at interview: 17
Sex: Female
Age at diagnosis: 16
SHOW TEXT VERSION
PRINT TRANSCRIPT
How long do the absences last for you?

Just a few seconds which in itself isn't too bad but when you consider that most of the time it's sort of a sequence of a few you then, begin to lose sort of a minute of whatever's going on and then it's 'oh what are we doing?'. Yeah I found that quite upsetting. People used to say to me that I hadn't been listening to them and I was like, 'Well you didn't say it.' 'But you haven't been listening.' I said, 'No I was.' [Laughs], 'You didn't say it.' So I think it was really useful to just know that there was a reason for that.

Does it always click with you, that must mean that I've had a seizure?

Yeah I think it does because you're not always aware that you've had them until you know that you've missed something and if someone says, 'Oh I told you that a minute ago.' I'll go, 'Oh, are you sure you told me?', 'Yes.' And I just think 'oh possibly I had a seizure then'. But I think with those they're quite common, I think, from people say you grow out of them as you get older but I've grown into them so [laughs]. I think I'd just take those ones with a pinch of salt it just happens. You can't go back and do anything about it so just make sure everyone tells me everything at least three times so that at least I know I've heard it once [laughs].

Do you feel that you have had to work harder because of some lessons or some things have been more patchy?

It's been noticeable the last few weeks when I've been going sort of class work to revise and I thought 'we weren't taught that'. I've got this photocopied sheet and I thought 'we haven't done that'. But obviously we have it's in my folder. I think it's just taken a bit more input from me and I've had to work a bit harder in that respect just to catch up what I've missed kind of [laughs].

Many people felt that absence seizures had a much bigger social than physical impact on their lives. Some said absences could be 'embarrassing' when they happened in the middle of a conversation. They said it was important that others repeated what they'd just been talking about, however trivial it was, so they didn't feel excluded. One person pointed out that absences could sometimes be funny if she had one just before the punch line of a joke!

 
Text onlyRead below

Anna tries to remember to tell people about absence seizures to avoid 'social awkwardness'.

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 11
HIDE TEXT
PRINT TRANSCRIPT
I mean there is no physical change; I don't feel unwell at all. If it's with people I don't know well, it can be quite embarrassing. If I forget to tell people, I think I should, I try and remember to tell them before I have a seizure, so they know if it happens. A couple of times with tutors or friends I've had a seizure and then had to explain afterwards, and that can make them I think feel uncomfortable which then reflects back onto me. I feel guilty that I've not told them, and that it's broken into a conversation, and it's disrupting, what we're talking about. It's not a physical feeling, it's more a kind of social awkwardness, that it can be normally, because most people are very understanding of it, it's just kind of more because its disrupted the conversation. I very rarely have a negative reaction to it, and that can be difficult, that can be really difficult, but it's so rare, that is generally fine.

Most people knew straight after an absence that they'd had one, either by the way they were feeling or from other people's reactions. 

 

Martyn kept his absences a secret for years and learnt to think quickly 'on his feet' when he...

View full profile
Age at interview: 22
Sex: Male
Age at diagnosis: 12
SHOW TEXT VERSION
PRINT TRANSCRIPT
When I first got them, I managed to, I became a really quick thinker because I had to pull myself out of situations. I had to say, 'Sorry I've, God I had a heavy night'. Or something but I was eleven so I never had a heavy night in the sense of drinking but [laughs] it was a bad night you know. Whereas the ones I have now if I have a petit mal seizure, I'll still be slightly disorientated afterwards I won't be able to think like that. I don't think that's to do with the medicine or if it's to do with it's just progressed slightly stronger. The reason I had to admit to so many people is because I couldn't think on my feet straightaway. You see a look of someone, you're chatting to them and suddenly, you realise, ah no it's happened again. But I wasn't able to think quickly enough on my feet to cover myself for that, because I felt a bit mucked ups. Now there are times when I think I can know if it's happened and because there'll be that slight sensation in my head where you think I wouldn't be able to think on my feet really quickly right now. And it's so minimal but it's the difference between being able to completely make an excuse and brand new straightaway, from coming round, seeing their face and straightaway within a second saying, 'Oh sorry, tired', to then having to see their face and say, 'Did something happen?'. Because I can't react and I'm not that straightaway. But the only way I really know is if I'm with someone, talking to someone or if I'm running and then I've stopped, I know I've had something.

People also said that travel and taking public transport could be tricky because they could miss their stop if they had an absence just before.

One man found his absence seizures more difficult and embarrassing to handle than his tonic-clonic seizures because he's awake and aware of people's reactions after having an absence but in tonic-clonic seizures he's 'out of it' and doesn't need to face people's immediate reactions.

Many felt that most people don't know very much, if anything, about absence seizures. In school, for example, teachers might not appreciate the huge impact that such subtle absences can have. This could often lead to misunderstandings.

 

Carole had an absence seizure on a train but the ticket collector thought she was messing around....

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
I actually didn't, I'm going to admit [laughs], I tried bunking the train basically. I remember this man saying, 'Can I have your ticket?' and I said 'No I haven't got one can I pay for it?' and before I could say 'could I pay for it?' and I'd said 'No I haven't got one,' I had an absence and I froze and he thought it was the whole teenager 'I'm not gonna move, I'm not paying for my ticket' and I completely froze. Then he was sort of shouting at me and I fell on the floor and then he thought it had got even worse, you know I was not going to move. They didn't move the train and they were like 'This girl is causing problems,' and they actually, four of them came and physically carried me off the train and this police officer got involved and it got blown out of proportion. I was absolutely furious cos I was like, 'How dare you? I was having an absence.' And yet again, my sister kind of stepped and afterwards and came and the next day came and spoke to them and actually dealt with it in a very different [laughs] different attitude to me. I was just so furious and it's yet again that battle of not everyone's gonna know, they just thought I was being a petulant teenager not paying and not moving and stuff like that but. It's yet again another, another thing that just happens.

Tonic-clonic seizures
In a tonic-clonic seizure a person loses consciousness, becomes stiff and the limbs jerk (convulsions). These used to be called 'Grand Mal' seizures. This is the type of seizure that people most commonly link with epilepsy.

Many young people we spoke to experienced tonic-clonic seizures. For some, these were completely controlled by medication but for others they happened as often as several times a week and even several times a day.

 

Charli describes what happens to her when she has a tonic-clonic seizure.

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 18
SHOW TEXT VERSION
PRINT TRANSCRIPT
It's always the same sort of thing that happens, with me I'm quite lucky I know whether I'm gonna go. But this one, obviously being my first one, I didn't have a clue. All of a sudden my vision started to get blurry and I started to twitch. I know that epileptics there's lots of different ways people have seizures, there's big seizures, small seizures, seizures that you don't even know happen. I twitch and I sort of start turning round and I start spinning round and then I'll just fall to the floor, have a seizure, I think I start shaking and, and whatever happens next. Then that's it, all I can remember next is being taken out of the school and put into an ambulance and I don't remember any of the period. Like basically I had to get down these big stairs, I don't remember getting down these stairs, like I was in a wheelchair they must've had to carry me down, it was really strange. So that first experience it was like 'God what was that?' but I sort of put it back into the back of my mind and I thought 'oh it's just nothing, it's just exam stress, whatever', thought nothing of it. Until the second one, that's when I thought there must be something wrong. In my whole time since I've been diagnosed which was in 2004, I haven't really had that many seizures. I've had about six, since my GCSE exam in 2000, it's not that major actually, compared to some people who've got it anyway. I'm quite lucky.

 

When Harry's seizures were at worst, he couldn't leave the house on his own and felt his life was...

View full profile
Age at interview: 20
Sex: Male
Age at diagnosis: 7
SHOW TEXT VERSION
PRINT TRANSCRIPT
Harry' Basically when my epilepsy was at its worst my life was hell. I would wake up at day assuming I was going to have a seizure.

Mum' We'd be lying in bed waiting for it happen, doors open, pillows on the floor, couldn't sleep.

Harry' I would actually have to sleep with pillows on the floor, had to move all my tables around because I would bang my head a few times.

Mum' We've had you on a mattress in our room haven't we?

Harry' Yeah, I've had to sleep in my parent's room on the floor sometimes.

Mum' You're just always on edge, always constantly on a knife edge with it.

Harry' That was it yeah. We were just waiting for it to happen. And it was like going over the top really, you just waiting, you don't want it to happen quick to get it over and done with but you're still, you're waiting, you're anxious for it to just you know like'

Mum' Get it over

Harry' And I was always, like if a bit of light was shining in, I was quite' paranoid wasn't the word because often I was right it did lead to a seizure. But when I didn't, like the light it was shining, I was like, 'I don't like this light, shut the curtains quickly.' But I was actually right to do that like 'cos the slightest bit of light I didn't like would lead to a fit. I would just get so upset when I had a bad seizure 'cos it would take me out of college and I loved college really. I loved going to college this one, it's one of my favourite things to do really.

Mum' And wouldn't be able to go anywhere without being on edge.

Harry' And I would occasionally feel a bit guilty or like my parents couldn't go out sometimes.

Could you just describe what your life was like?

Harry' Well I was an 18, 19 year old who couldn't walk down the paper shop on my own. I couldn't walk my dog. I couldn't, I couldn't do anything really.

Mum' You couldn't use the bus 'cos you couldn't use public transport.

Harry' No, I couldn't use the bus 'cos I had a seizure on the bus, and I got off and I was like wandering around the dual carriageway.

Mum' He didn't get off at the stop did you, and I had to get the car out and chase him up the dual carriageway.

Harry' That was very scary a couple of hours after it thinking what could've happened, yeah. Also one of the big fears that I had when I was having these big fits is what if I have some, is it one fit, 'cos these fits are usually dangerous in the sense that they're dangerous to you, your brain can't take it so, 'cos your brain can only take so much. And I was worried that one day I would wake up and I wouldn't be able to walk or, I would wake up as a you know.

Mum' Cabbage.

Harry' A vegetable basically. And I wasn't afraid of dying really, I was afraid of that because I always thought if I have a seizure and I die I don't know about it, that's it, but if I'm in a wheelchair or I don't want my life ruined by it.

For these people, tonic-clonic seizures lasted anything from thirty seconds to a few minutes. One woman described having a prolonged tonic-clonic seizure which lasted forty minutes and the ambulance was called (see section below on status epilepticus). A few people had wet themselves during a seizure, which had been especially difficult to cope with if it had happened in public.

People felt physically and emotionally exhausted after a seizure; tired, groggy, confused or upset, panicky and frightened. 

Some were sick afterwards, had a bad headache and many said their speech was slurred. Several felt depressed or low for a few days after a seizure. Few described feeling and appearing 'drunk' after they'd had a tonic-clonic seizure. 

 

Becky feels disorientated, groggy and really upset after a seizure.

View full profile
Age at interview: 23
Sex: Female
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think my seizures from what people tell me, from what I know, they last for about 2 to 3 minutes I think. That's from me sort of flaying round and you know, and then I gradually sort of come round. Very disorientated, very, a loss of co-ordination, which also sometimes happens before I have them as well. I lose my co-ordination a bit, like I said to you before when I was talking about my friends like if I can't string my words together. After I gradually come round after my seizures, I'm very distressed, really really upset and I never know where I am. I don't usually know what's happened as well. I don't usually know I've had a seizure. Someone usually has to tell me. And then I get very upset, cry, cry a lot, quite often I'm sick afterwards as well. I'm like very groggy, and then tired really and I just need to sleep, and I sleep for about 3 or 4 hours maybe. Then usually I come round and I'm fine again after that. Like I said to you I went power boat riding in the afternoon when I was in Florida, it's just a case of needing to sleep off the you know, come out of the grogginess, and sleep off the what's the word' being unaware of where I am and things like that.

 

A taxi driver refused to give Rania a lift after she'd just had a seizure - she felt groggy and...

View full profile
Age at interview: 16
Sex: Female
Age at diagnosis: 15
SHOW TEXT VERSION
PRINT TRANSCRIPT
I'm completely unconscious, and I just stiffen up and sort of spasm. My muscles tense up and that so I get a lot of injuries through it you know. And then they usually last well, one that isn't bad will last under 5 minutes. A bad one would be, well one that doesn't last five minutes you know I won't come round, then I stop for say 2 to 3 minutes, and then go into another one, and then possibly another one, and you know and need oxygen. But when I come round I'm sort of groggy and that and I get sometimes slurred speech from lack of oxygen, so I've been accused of drinking before, or being drunk. So that's quite difficult as well because we were trying to get a taxi home once and the taxi service refused me saying that they weren't going to take me because I'd drank too much and sometimes you get stopped by the police, yeah. I think once I got in trouble for drunk and disorderly.

How soon people recovered after a tonic-clonic seizure varied a lot. Some were fine in fifteen minutes and could carry on with what they were doing. Most slept for a few hours after a seizure and felt OK by the next day. A couple of people said it took them a few days to get back to normal after a seizure. 

 
Text onlyRead below

Ashlea takes a while to come around after a tonic-clonic seizure and loses her memory for a while...

View full profile
Age at interview: 21
Sex: Female
Age at diagnosis: 18
HIDE TEXT
PRINT TRANSCRIPT
That lasts about five minutes and then afterwards I'm unconscious, like completely unconscious, nothing will rouse me unconscious, which is technically a coma actually. I don't know how long that lasts at all, and I don't know much because I do not remember like anything for like hours. When I had the first one I do vaguely remember the ambulance man helping me up the drive, but that is the only memory I've got from a period of about six hours. So even when I'm conscious and I'm like, my parents came and stayed at the hospital after I had the big one, they actually gave me my birthday present early, and I didn't remember getting it, at all. So when I like looked in my bedside cabinet the next day I was like, 'Oh, what's this?' and had no idea that it was mind because they gave it to me and I was happy at the time and everything, but I've got no recollection [laughs]. That's the main thing, I just lose memory and I have the worst headache ever I've ever experienced for like, it tends to last between 24 and 48 hours.

Because tonic-clonic seizures involve uncontrolled jerking and people often fall to the ground, they can injure themselves. Many had bitten their tongue and got bruises on their face and body. Some had broken bones or 'smashed' their face; one man had injured his face so badly he had to have surgery. Another had dislocated his shoulder in a bad seizure and now when he has a seizure, this tends to happen again.

 
Text onlyRead below

Martyn has had many injuries after a seizure, including burning his face with boiling water.

View full profile
Age at interview: 22
Sex: Male
Age at diagnosis: 12
HIDE TEXT
PRINT TRANSCRIPT
It seemed at one point I was always injured, I always had a burn or, a cut. I don't know how they happened but I'd put the kettle on one day and then came around and was burnt all down my body I'd put scalding water on myself. I don't really know how it was crazy, I was standing up so it meant I must have had, sort of minimal grand mal seizures where my head blocked, somehow I managed to pick up the kettle which had just boiled and pour it down my arm. I came to not really knowing what was going on, something wasn't right. I didn't realise it was pain until I looked down and saw like everything, so I jumped straight in the cold shower. And then there's just countless examples, I'd wake up I'd had one and I went through a period of drinking loads of tea, obviously you need boiling [chuckle] water for that. I came round, my face burnt this side because I'd had a fit and ended up in, knocking over a glass of, knocking over a cup of tea and having the fit in the boiling water on the ground [laughs]. It was just like really ridiculous.

Young people's experiences on how to reduce risks of seizures at home, see 'Living arrangements and safety'.

Tonic and atonic seizures
Tonic and atonic seizures are also generalised seizures. In a tonic seizure, the person's body stiffens and they may fall over. Atonic seizures (or 'akinetic' seizures) are, in a way, the opposite of tonic seizures. Instead of the body going stiff, all muscle tone is suddenly lost and, if standing, the person drops to the ground (also known as drop seizures). A couple of people had atonic seizures. Both of these seizure types may lead to injury, often of the head, face or jaw because of falling.

Myoclonic seizures

Myoclonic seizures are generalised seizures which involve brief jerks of a part of or the whole body. A couple of people had had these and they usually happened early in the morning, between sleep and waking up.

 
Text onlyRead below

Bex has myoclonic seizures early in the morning and usually her arm jerks.

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 13
HIDE TEXT
PRINT TRANSCRIPT
And what about those myoclonic jerks? How do they manifest in you?

I get them early in the morning. If I have just woken up or if I have been woken up (unclear word) or if I am tired sometimes I just jerk. And it will be like a single jerk but sometimes I get a bit shaky as well. That's about it.

Is it an arm or leg or'?

Usually my arms. Usually one arm or something. Like if I've been with people and I have spilt stuff you know on them because I have been so close and I have just jerked you know.

Status epilepticus
Status epilepticus is a term used to describe continuing/prolonged seizures of any type. Convulsive status epilepticus involves limb stiffening and/or limb jerking. 'Non-convulsive status' refers to a continuous or prolonged absences, atypical absences or complex partial seizure, or recurrent seizures. Status epilepticus and non-convulsive status are emergencies and require immediate medical attention. In very rare cases, status epilepticus can be fatal.

A few young people we spoke with had had one episode of status epilepticus and a couple of people had had several.

 

Anna had a day in school when she kept having seizures. She has lost all memory of the whole...

View full profile
Age at interview: 20
Sex: Female
Age at diagnosis: 11
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think from what I can remember I must have started seizuring in the morning, once I'd got out of bed, 'cos I remember putting my clothes on, and I don't remember much else. And my mum said I was really grumpy, I was really sort of non communicative. Then the only thing I can really remember, I can remember sort of a split second of my history lesson because I was at school and I had this incredible paranoia that people were going to shout at me, which is probably why I was quite grumpy with people. Then I started losing my, I couldn't hold things properly, I started sort of dropping things and I was trying to eat my lunch and I couldn't put food in my mouth and apparently it was like being, I looked like I was drunk and thinking about it I probably felt a bit kind of woozy, I don't really remember. I kind of half remember going to hospital, but only these kind of flashes of things that came back quite a while afterwards. I'm probably quite glad I can't remember most of it because I think would have been more frightened if I'd been more aware. 

Unfortunately because that must've been the new year that I went to hospital, I lost it sort of from my memory, I've lost most of that December. Even though I wasn't seizuring over Christmas, I had kind of retrospective amnesia, which was more strange than the seizure itself, it was this sort of losing Christmas and things which was quite weird. They're not quite sure why that is, I think it was just because it was a kind of massive brain trauma. But generally it's sort of marked by a lack of memories more, than sort of bad memories. It's a bit of a blank.

 

Rachael ended up on a ventilator in an intensive care unit after having an episode of status...

View full profile
Age at interview: 25
Sex: Female
Age at diagnosis: 21
SHOW TEXT VERSION
PRINT TRANSCRIPT
I was fitting continuously, they said it was, I think it's status epilepticus it's called. I've seen it in hospital there as well which is quite scary. It's just where you constantly fit and you don't stop. It can be really, really dangerous, so like she called 999 straight away, she said, 'Oh my God, my friends fallen down the stair, and we think she's epileptic, and you know she's having a fit and she's just not stopping,' and apparently I was vomiting as well, it's just really unpleasant. And then I remember sort of like coming round slightly in the ambulance, and I was in the ambulance, I didn't realise what was going on, I just felt really sick I was just like, 'Oh my God.' I don't know why, I just remember being sort of turned on my side. Hearing what my friends had said that had happened, they sort of like shooed everyone out and they were like, 'Oh, Yeah,' it's quite embarrassing what they were like, you were oh pulling down your trousers and stuff 'cos they had to give me some, it's gross, they had to give me some rectal diazepam [laughs], thank God I was asleep, yes, quite embarrassing.

Yeah, apparently I was like I say I've been told things from my friend who was with me at the time, like I was down, tucked up in, honestly you should have seen this passageway, it was tiny, I don't know how I fitted in there. I was so surprised I didn't hurt myself. Apparently what happened was, I was brought into an A&E, I was fitting, I was vomiting, I was not well, they'd been trying, obviously 'cos they were saying like I was fitting so they were trying to get my lines in, and that's why my arms were all bruised. Apparently I stopped breathing, that's what I've heard and that's why I was on a ventilator. Also as well like I heard that they'd cut all my clothes off me [laughs], so yeah, it's just, the only recollection I have is what people have told me. And also as well just waking up in ICU, on that ventilator, after having funky dreams [laughs].

Other types of seizure
A couple of people had an 'unclassified' type of epilepsy which means that doctors could not name the type of epilepsy they had. Epilepsies are defined according to a framework which takes into account the seizure type(s) and the results of medical tests, but not all epilepsies fall within this framework. One man was told that there were only a few people in the world with his type of epilepsy.

 

Morven describes her seizures which always happen at night. Doctors have not been able to...

View full profile
Age at interview: 21
Sex: Female
Age at diagnosis: 8
SHOW TEXT VERSION
PRINT TRANSCRIPT
Nowadays they're more like a tonic clonic, the one that I have during the night. I start off with groans in my throat and then I start the jerking of the body, then just go rigid for well I don't know exactly how long it is, 'cos I don't know right, it's the one, I do know about some of them, but those ones it's just the jerking I'm kind of subconscious of. I don't know anything about the ones I go rigid.

Do they ever happen in the daytime?

No, I never take them in the day. I mean when I get a lot of stress or pressure I do find myself having the funny feeling in the head, coming back but that's rarely now, now that I'm not at school getting all the teasing that I used to get and not any pressure from like where I'm working and things, I don't get the daytime ones unless something serious happens that gets me far too depressed. So it's really just stuck to the night now.

A few people we spoke with had seizures only, or mostly, at night-time. These are called nocturnal seizures. People with nocturnal seizures said they sometimes woke up confused at night just after they'd had such a seizure. Others realised in the morning that they'd had a seizure because they weren't feeling well or because somebody else, like a parent, had noticed they were not right and suspected they'd had a night-time seizure.

 

James has nocturnal seizures and sometimes he sees different colours during a seizure.

View full profile
Age at interview: 20
Sex: Male
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
James' I don't ever fall over like, I don't have that kind of seizure, I don't have something like that.

What kind of seizures do you have? What are they like?

James' I have ones a bit like, I go to at night. When it's night time, I go to sleep, and it's just all over again, it's finished.

Yes. So you don't really know when it happens if you're sleeping.

James' No. 'Cos I'll be sleeping, if I'm sleeping.

Keyworker' Sometimes did you say that you see funny colours? Do you want to repeat what you see sometimes, what kind of things you see. Can you remember?

James' It's where sometimes I see just lights, different colours.

Oh right. Is it that just before a seizure, or is it when you have a seizure?

James' It's a bit where you see lots of colours, like different colours. The lights doesn't happen every day, that doesn't happen every day or at night time.

Last reviewed May 2016.

Last updated May 2016.

donate
Previous Page
Next Page