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Epilepsy

Epileptic seizures

Epilepsy is the most common neurological condition (affecting the brain), in the world. It is defined as a tendency to have recurrent seizures. In this section we'll only talk about epileptic seizures, although other types of seizures, not caused by epilepsy, also exist.

An epileptic seizure (sometimes called a fit, an attack, turn or blackout) happens when ordinary brain activity is suddenly disrupted. There are many different types of seizures, and a person with epilepsy can experience more than one type. Seizures can occur when you are awake or asleep.

Doctors classify seizures by how much of the brain is affected. There are:

  • focal (or partial) seizures – where only a small part of the brain is affected
  • generalised seizures – where most or all of the brain is affected
  • unknown onset - some seizures do not fit into these categories and are known as unclassified seizures.

During focal (partial) seizures the disturbance in brain activity begins in or involves one part of the brain. Focal seizures can be either 'simple', when consciousness is not affected, or 'complex', when consciousness is affected to some degree. While people might have similar types of seizures, everyone has their own experiences of them. Many of those interviewed described their experiences of simple focal seizures. Sometimes simple focal seizures develop into other sorts of seizures and so are often referred to as a 'warning' or 'aura'. 

 

Describes his experience of simple partial seizures.

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Age at interview: 43
Sex: Male
Age at diagnosis: 27
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Right yes, the aura was very unusual and, at that time when I didn't really know what it was all about was quite frightening, even for somebody of 27, so I'd hate to think what it's like for a child. I had it a few times and until you get onto the tablets where you get controlled it's, the control with the tablets takes away the aura. So at the very beginning the first few times it happened, I would be looking at something and I'd be able to see it quite clearly in the same way I can see yourself now, but then in front of that would be like this daydream. And the daydream, as I say, in a couple of instances was I'd be stood on the side of a bath and I'd just be looking down at kids who I was teaching, and I'd be telling them to you know swim backstroke or front crawl or whatever. And it was so difficult all of a sudden when you didn't know what this was about to understand what was going on.

 
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Explains that an aura might develop into a tonic-clonic seizure.

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Age at interview: 27
Sex: Female
Age at diagnosis: 26
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But the aura is like oh my, it lasts much longer and you're aware of what's happening to you. You feel these feelings in your body. When I have an aura, it starts from the left side of my head. I feel this really burning sensation. And my mind is totally blocked out. I can't think and my ears get blocked. First of all I get this ringing and weird noise in both my ears, and then my ears get blocked out. I can't hear a single sound, word or anything. There is no trace of sound in my ears and I can't hear anything and my mind gets blocked. I can't think or utter a word. Then I get this burning sensation coming down from the top of my head to my left face. It descends down all the way to my hands and right to my toes. And I feel as if all, that part of the body is being burnt out. I start screaming but I can't hear myself screaming because I can't hear any sound. I can't say anything because I can't remember any word or anything. All I can do is just scream, and I can look around but I can't say anything. I lose sense of what's going on. I get pins and needles and I feel as if my veins are gonna pop. I feel as if my brain is gonna burst and I think this is it, I'm gonna die. I get really scared.

This is when I'm having these auras, I'm describing my auras. Then I get pins and needles. My arms and legs they start getting numb and I can't feel anything. And I think I start, try to shake my arms and my legs but I can't move them. And I can't speak either 'cause its like I don't know any language, I can't remember any word 'cause my mind doesn't work at all. And I'm just aware that I'm conscious that's all, I can look around. I don't know how long this lasts for but it lasts for a couple of minutes. And when I do, when I do have a fit, its like the sensation of these auras, it gets more and more intense and finally it gets to my head and I just black out. My relatives and people who've seen me have these attacks say I shake tremendously, my arms and legs shake. And I stretch my arms and legs out really, really hard. And they have to hold me back and I move my, I think they say I move my head and I move my eyes, roll my eyes around and do weird things. People who see me have an attack for the first time, they get really scared. And when I have a fit I just have it and I don't know, so when I have these auras I don't know whether this aura's gonna pass by or whether I'm gonna have a fit. 

In complex focal seizures, consciousness is affected and so the person might have limited or no memory of the seizure. The seizures might be characterised by a change in awareness as well as automatic movements such as fiddling with clothes or objects, mumbling or making chewing movements, or wandering about and general confusion. One woman described her experiences of having complex focal (partial) seizures and what happens during these attacks.

 

Explains what happens during her complex partial seizures.

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Age at interview: 42
Sex: Female
Age at diagnosis: 6
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Apparently not long after that I was doing a ballet dance in front of my mum and I did a very involved twisty movement, fell down on the floor and started shaking around, and she said she thought for a while that was still part of the dance (laughs). She didn't realise there was something happening. That amuses me, to remember because the first time my GP actually saw me have a seizure in his presence he said I sort of got up and looked like I was moving and dancing and he wasn't quite sure if I was taking the Mickey or having a seizure because he hadn't seen one himself in all his working life (laughs). 

Yes I mean the majority of them are complex partial seizures where I will cut out for a moment or two, come round maybe with a bit of a sore head and feeling tired and think 'oh did I have another seizure?' And sometimes again according to my tiredness, my level of down at the time it can be two maybe three minutes even in which case I will come round with quite a sore head, feeling a bit dizzy. And then I know I've had a seizure. 
 
 

Describes her experiences of having complex partial seizures.

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Age at interview: 18
Sex: Female
Age at diagnosis: 14
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So as you were growing up was it always the same or it varied? 

It varied, I can remember ever since I was little having this sort of feeling in my stomach of having to run, you know. I remember that. And then in school I think I know I used to find it hard to sort of, I don't know what the word is, not interact with people, hard to um, I don't know, whereas people would react sort of normally to arguments as it were, I'd blow up out of nowhere and really lose the plot.

So you would shout?

Yeah and then it would go from there and it was also the more stress I had, then I'd start seeing things. And I'd think people were coming for me you know, and they were just getting closer. So I used to lash out. 

It varies to be honest. I usually, it feels like my tongue is ten times the size that it is and my speech becomes really slurred. And I feel, I feel like I've gone 'thick' because I'm thinking the words in my head but they're not coming out of my mouth the way that they should be. And last time I had a seizure it was quite bad and I ended up in hospital. But my feet had gone so that I was walking on the sides of my feet, but I didn't have any control over that. I couldn't get my legs straight. And I was seeing things coming in through the windows and walls and things. I know they're not there and I know I'm hallucinating, but there's nothing I can do about it. And its really quite scary, its weird. 

In generalised seizures the whole of the brain is involved and consciousness is lost. These often occur with no warning and the person will have no memory of the event. Tonic-clonic convulsive seizures are the most easily recognised type of seizure. They are sometimes called a 'grand mal' seizure, although this term is no longer used by doctors. Several people described their experiences of tonic-clonic seizures. One woman explained how she felt before having a tonic-clonic seizure. Another discussed some of the difficulties with incontinence following her seizures.

 

Describes what happens before she has a tonic-clonic seizure.

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Age at interview: 42
Sex: Female
Age at diagnosis: 6
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So when you have been having the seizures, have they always been the same type of seizures or does it vary?

Oh no I've got to be awkward, they do vary quite a bit. When I was younger they used to be, or the ones that were immediately recognised were the major type, tonic-clonic seizures, again I get plenty of warning for those. I've always had this opportunity to be able to say 'Oh Mummy I've got my lights,' which always meant I was going to have a seizure, because I had a sort of prismatic perception in front of me and I was never able to describe that to a doctor until somebody flicked a bit of light under a television screen and I realised then it sort of clicked in my head that's what I've been seeing all these years. 

And the idea as well about a dying man seeing his life flashing before him is something I can conceive. I can understand that idea because when you're going through that sensation its like having a lot of memories running past your mind really quickly and you get the feeling, and if you could just freeze-frame that you could identify with something that's going through your mind. But it's going through your mind too quickly for you to stop it and recognise anything and that can be frustrating but exciting at the same time, it's a funny sensation. 

And how long does this warning last? 

Well to me it seems like a couple of minutes but people observing me say it's more like one minute than two. And again the length of the warning will determine or not determine, that will depend upon I suppose the type of severity of the seizure I'm going to have at that moment in time. If I'm under a lot of stress it could be a very, very long seizure in which case the warning will be long.

 

Discusses some of the difficulties with having tonic clonic seizures.

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Age at interview: 48
Sex: Female
Age at diagnosis: 10
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I think they last about fifteen minutes, I think probably after fifteen to twenty minutes I'm completely with it again. I know how to get home if I'm out, I know where I am, I know what to do next. Unfortunately in the last few years I seem to have started, in the last few years I've become incontinent in a seizure, not just single, not just singly but doubly incontinent which is horrible. I think that really sums up the humiliation of having a fit. Not only have you just had a fit so you've got this shocking headache, you don't really know where you are, you feel upset, but you're wet. Your clothes are wet and dirty and if I'm on my own I've got to deal with that. So clearing that all up is really nasty. For years and years, for more than twenty years I, I wasn't ever incontinent but that seems to have been the thing that as I've got older has occurred. I've also got a shoulder that doesn't work, which is to do with the strain as I have a seizure I seem to always go around on one side and that puts my shoulder, it dislocates. It no longer dislocates because its so out of joint but it, there's nothing to dislocate in or out of.

One woman explained that she occasionally had atonic seizures or drop attacks. These involve a sudden loss of muscle tone, causing the person to fall. Other people discussed having absence seizures. These are sometimes called 'petit mal' by some people. They involve a brief interruption of consciousness during which the person becomes unresponsive.

 

Explains that she occasionally has atonic seizures.

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Age at interview: 46
Sex: Female
Age at diagnosis: 18
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Yeah I get a warning. 

What's your warning? 

It's just a feeling, its funny, it's a peculiar feeling, it's very hard to describe.  Its um, its like a nervous thing that comes up, you don't sort of panic but it sort of comes up from your stomach and your heart floods a bit sort of thing - oh no not this thing again. 

Usually if I'm in an area, if there's a few people and I don't want to make a fool of myself' 'Sorry, I'm just going to the loo,' and I pop to the loo and sit on the loo for a minute and it passes over. And you become a little bit vacant for a while after, someone's talking to you and you say 'Sorry, what was that again?' You'll ask what they're saying but it's only for a matter of minutes, and a lot of time people don't know. But there are some like if I'm out, like yesterday I was out with my husband, I was in a shop, Ikea actually, with my husband and my son. And I could feel it happening and I thought, oh it'll pass off because some days you feel it come on but it passes off.  It just goes away some days. It come on and plonk, I went bang down on the floor and I got up straight away again. You know I think the people in the shop thought I'd tripped over or something. You know my husband's very good at camouflaging' 'Come on, get up.' And my son and that, he's very good and says 'Are you all right?'  But he doesn't make a thing of it, none of them make a big thing over it so.

 

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

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Age at interview: 20
Sex: Female
Age at diagnosis: 14
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And it was a pain because I could either think or I could speak but I couldn't do both, which made it really difficult to have a conversation with me. I was once babysitting with my friend, I think I was about 15 or 16 at the time, and she asked me a question and apparently it was five minutes before I answered her. I didn't realise it was five minutes, but that's what she said.  So basically she'd been sitting there, I hadn't answered her and she'd been sitting there and then suddenly I answered this question and because my answer just sounded so random she was like 'What?' 

There were the petit-mals when my eyes flickered and  sometimes they could do it really, really badly, so badly that I couldn't actually see anything.  I had to close my eyes because it hurt and it was really strange because even then I would get this same feeling of helplessness and be really emotional and I'd burst into tears over anything. But I couldn't help it, it just  came with it and it was so annoying. The grand-mals were the actual fits and so there were different types. 

So yeah, that was one of my bigger stresses, rather than the fits. The fits were annoying, the eye flickering was really, really annoying because I couldn't control it, never could I control it and it would happen sometimes and I wouldn't know it, but other people could see it. 

Some seizure patterns might not fit into any of the above categories or might include elements of different seizures. Some people experience seizures only during sleep. These are called nocturnal seizures and can be focal or generalised. One woman described how her night seizures changed after her drug treatment was altered. 

 
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Discusses the different types of seizures that her son has.

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Age at interview: 22
Sex: Female
Age at diagnosis: 1
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In the morning when he wakes up he has myoclonic type seizures where his head goes to the left and his arms raised and his, he can have about 5 or 10 minutes of these. Sometimes these can carry on until he has the major seizure. It builds up to a major seizure and then, you know, he, he has to be helped to bed and all such things like that. But it's the build up to these major seizures. It can, the build up can be about seven days prior to it. The behaviour can get, he can get quite aggressive and out of sorts and bad tempered and, and he gets obsessive about things. Then you can think it's like a storm brewing and then he has the seizure then he's OK for a while, then it all happens again. 

And how many seizures is he having now? 

Well he has seizures every day, in one shape or form. If it's, if it's not absences, it's myoclonic type. It, he can have partial complex and major seizures. Within a week he can have a, one or two or all of these. But I try to, I always have done and when he was very small I used to walk him down the street and he was having seizures as he was walking. Just to keep him occupied. I find if he's very bored he'll sit, have seizures, and very excited he'll have seizures. And so it's keeping his moods at a reasonable pace. 

 

Describes what happens when she has nocturnal seizures.

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Age at interview: 49
Sex: Female
Age at diagnosis: 14
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And I got myself a job, and was quite happy with it and then whilst working, where I'm actually working now, I discovered that things probably weren't looking so good because I was having lots and lots of headaches and I was having more seizures in the night.  And what was happening now was I was probably having grand mal attacks because I was waking my husband up, without intending to, and I was now biting through my tongue. And I would come round to find myself feeling absolutely awful, thundering headache, I couldn't move my mouth because I'd bitten through my tongue. There was blood all over the pillow and I realised oh you know this didn't used to be like this. 

It can't be that bad [now] at night because I'm not biting through my tongue, I don't get blood on the pillow, I don't see the blood running down my chin, I don't have that. Also I haven't woken my husband, but I have to say he does sleep like I log. But I think if I were to have grand mal in bed it would wake him up. So whilst I wake myself up and I'm thinking 'oh I think I've just had a very bad dream' and I'm not quite aware of where I am, it's only a few seconds to pass and I realise I'm at home. It's my bedroom and you've obviously just had a mild seizure. So it does take an awful long time to go back to sleep and yes I'm always left with an absolute thundering headache, but apart from that it's just fine.

Most seizures last for the same length of time for each person and usually stop of their own accord. However, in some circumstances seizures are not self-limiting and do not stop or one seizure occurs after another with no recovery period in between. This situation is known as 'status epilepticus'. If it occurs with a tonic-clonic seizure it is a medical emergency. This woman recalled a status epilepticus episode she had on one occasion. 

 

Explains what happened when she had a status epilepticus episode.

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Age at interview: 39
Sex: Female
Age at diagnosis: 25
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Well luckily I only had probably half a dozen grand mal seizures in those twelve, fifteen years of having the epilepsy and it was actually diagnosed as complex partial seizures and I had one bout of status epilepticus which is when you have a fit, come out, go back in, come out, go back in, and terrified my poor mother (laughs). But that was just the one off.

It was my birthday, and I'd been out with friends and drank much too much and I think that's probably what caused it. My mum was there luckily and if you want me to describe it, she's told me several times that she'll never forget me being in this horrendous sort of distortion. My whole body was twisted up you know, like in spasm, and she said I seemed to sort of, my eyes went back up in my head, made this horrible choking noise in my throat and then I appeared to sort of come out of it, went back into it. And she said this happened several times that she just thought right, although she'd done the St John's Ambulance course she was used to me and my fits and what to do, whether it was a complex or whatever, even grand mal, but this was pretty terrifying. So she got an ambulance and the next day I ached, I remember aching, my body had been in such spasm. Some people have to go through that every day you know or every other day, for me it was luckily just a one off. 

Many people also discussed their feelings of tiredness and confusion after a seizure. How long these feelings lasted often depended on the type and intensity of the seizure.

 

Discusses recovering after a seizure.

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Age at interview: 35
Sex: Male
Age at diagnosis: 13
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Obviously the cycle you go through when you're having a seizure is, everyone talks about the aura or the initial trigger and that may not happen but ultimately when you're coming out of a seizure it's the disorientation process you're going through, there's parts of your brain which are not working. You haven't totally shut down because during a seizure I've cooked meals and eaten, so that's fascinating. However, the psychological problem when you're coming round is the fact that you weren't in control, so its like having a squirrel in your head that's doing something different. But when you're coming out of it there's definitely the depressive stage your going through which is natural, it's the chemicals in your body which have to control you in some ways, that is what needs to be explained by a neurologist to people, and that is what's not given time for. 

If you become aware of those things you have every right to be depressed. If you want to come out of it and because you've got to get on with life, but in many ways by accepting that, you appreciate it's your body telling you things. If you become aware of those things that's when you can talk to someone, or cry or whatever it is but those are the areas which now need to be emphasised because everything is about the instance of seizure, its not about that recovery process and that bits fascinating and that's where the overlap is. I'm now very aware of those things.

Last reviewed May 2016.
Last updated May 2016.

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