Epilepsy in Young People
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.
Describes his experience of simple partial seizures.
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.
Explains what happens during her complex partial seizures.
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.
Describes her experiences of having complex partial seizures.
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.
Describes what happens before she has a tonic-clonic seizure.
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.
Discusses some of the difficulties with having tonic clonic seizures.
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.
Explains that she occasionally has atonic seizures.
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.
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.
Describes what happens when she has nocturnal seizures.
Describes what happens when she has nocturnal seizures.
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.
Explains what happened when she had a status epilepticus episode.
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.
Discusses recovering after a seizure.
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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