Epilepsy is the most common serious neurological (affecting the brain) condition, that affects people of all ages, ethnicities and social classes.
'Epilepsy' is defined as a tendency to have recurrent seizures. Seizures happen when the brain's normal electrical activity is disrupted. In this section we'll only talk about epileptic seizures, although other types of seizures, not caused by epilepsy, also exist.
Here young people talk about the symptoms and the first few seizures they experienced before they were diagnosed with epilepsy. People we spoke with had their first seizures at different ages. For most, seizures started in their teens, for a few they began in childhood, or in their early 20s.
Symptoms
Only a few people we spoke with recalled having any symptoms before their first seizure. These included fainting, headaches, vomiting, and one young woman described repeatedly losing the sensation in her arm.
Katherine started getting severe headaches, being sick and losing feeling in her arm.
Katherine started getting severe headaches, being sick and losing feeling in her arm.
Age at interview: 22
Sex: Female
Age at diagnosis: 15
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It all began when I started getting really bad like headaches and then I started getting sick with them, then one night I lost all feeling down my arm, that was when I was about 15. And they rushed me to the hospital, and they diagnosed a brain cyst, and then shortly after that I started having seizures. Then, this kept continuing so I went back to the doctors and then eventually I had an EEG but they lost the results, so it eventually took a year the diagnosis, 'cos they lost the results. And then after I've been having a lot of problems like with hospitals, doctors, one minute I'm faking them, then I'm not, but now they have said it is epilepsy now, so.
Going back to those early symptoms, what were the headaches and being sick, what was that like? How much do you remember?
Really bad pressure in my head. And just felt really tired all the time. And I kept having to come over from school. And I lost all feeling down my left arm, which I still get today.
And did it happen all the time?
Every day, started every day.
Another woman had had frequent febrile convulsions when she was a child and felt that these could have been linked to her epilepsy. Febrile convulsions occur in young children when their body temperature rises rapidly. This is not epilepsy but a child who's had them may be slightly more likely to have epilepsy later in life.
Gradual build-up to the first seizures
Even though most young people didn't describe any symptoms as such, for many there was a slow and gradual build-up to their first 'full-blown' seizure, or before they thought something was actually wrong. For some, the build-up lasted for a few months, others described having had 'funny moments', episodes of feeling 'funny' or 'dizzy' and having 'jerks and twitches' for years. The gradual start to seizures was more common for those who had absence seizures and simple and complex partial (focal) seizures.
Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...
Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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Well the thing is I'm not entirely sure when it started because I never went to a doctor and after my seizures I can't really remember them. In fact I can't even remember what I had for breakfast. I think I had yoghurt. But I'm not sure, so remembering far back into my history and I think it's also something that I've kind of blocked out so the problem is I don't know when it started. But my first kind of memories are of having seizures in my early teens and I really, even though it's something that was always there I think, it was something that I started to realise was wrong. I realised that other people didn't have these and that it was something completely different and unique to me. And it was, it is very scary to have something like this and not know what it is. I mean I thought that perhaps I was a witch or you know, I was romanticising a little bit but maybe I was a witch and I had special powers that no one else had and that I just had to find out what they were [laughs]. I kind of thought that I was really special and wow look at me. But these things are actually really horrid. I mean they're great the first part, they are really scary, but they are kind of a bit, wow I'm seeing into a fourth dimension. And then, like almost like you're sticking your head through the fabric of reality and looking around and it's not particularly nice but you're seeing something really different. But it's not very nice afterwards. And it was really difficult to come to terms with at any point. But when you're younger and it made me a very melancholy child. It made me very quiet. I read a lot. I didn't have many friends. I was bullied because I didn't have many friends and I was shy. I didn't like to talk to people, complete opposite of how I'm now. And I just, I think it made me stronger as a person when I was younger, but it made me very reserved, very quiet.
Problem is that they're, as I said, very hard to describe and my mum, whenever I told my mum about them, she was worried, she thought that maybe I was a bit crazy because people don't really see that side of epilepsy. When they think epilepsy they think of you kind of, you know they think of the stereotypical epileptic fit, the convulsive fit. Someone falling to the ground, the old spoon in the mouth thing [laugh], which is not actually a good idea and you know people blacking out. They don't think that you might be able to be awake and when they see you having a complex partial seizure they just think you've kind of gone a bit dopey in the head, that you're just being stupid or that you're just not paying attention and so they don't understand what you're going through. So when I described these things to my mum and my family they just thought maybe I was going a bit crazy and they told me not to tell anyone. Because I had depression as well they were worried that that was to do with that and maybe I was just going a bit loopy in the head. So I never told anyone.
Archie describes having auras since he was 5 and then a sudden tonic-clonic seizure at 10.
Archie describes having auras since he was 5 and then a sudden tonic-clonic seizure at 10.
Age at interview: 16
Sex: Male
Age at diagnosis: 10
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It all started when I was about 10, it was, I was just going into elementary school and our dog ran away. And we looked around and couldn't find him and then I went back and I started having breakfast and I began to feel this aura, that I'd been feeling for, since I was about 5, and my Mum then said that she, she could, couldn't talk to me or anything, I was completely out of it then. And so I was having the seizure and then she phoned the ambulance to come and get me but I was just sleeping down on the floor and she just got the ambulance and next, and then I woke up and I think I was in the hospital.
Several people said these early experiences were scary as they didn't understand what was going on. Some hadn't been concerned because they didn't think these experiences were anything out of the ordinary and weren't aware that others didn't in fact experience this. A few people said that it is only now, after being diagnosed and looking back in time, that they realise that early episodes of 'passing out' or frequent 'twitches' were connected to their epilepsy.
Nick used to get 'twitches' when playing sport when younger and now, looking back, thinks they...
Nick used to get 'twitches' when playing sport when younger and now, looking back, thinks they...
Age at interview: 21
Sex: Male
Age at diagnosis: 15
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When I was about twelve, thirteen, I used to have problems in like playing games like badminton, would you believe it. When you're always looking up and you were always hitting it down, I used to have things where I would like have little twitches in my left side, and then I'd have to sit down and that was it. And that was that was just something that I used to talk about with my parents, but we never really thought much about it really I suppose and then when something happens you think back on it and say, that was an early sign.
For many people with absence seizures, it was their parents or teachers at school who first noticed they had started 'daydreaming', 'ignoring the teacher', being 'vacant' and having 'blackouts'.
Ben had absence seizures in school and 'staring off' or 'ignoring the teacher' who thought this...
Ben had absence seizures in school and 'staring off' or 'ignoring the teacher' who thought this...
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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Basically it all started when I was about twelve. A teacher in my primary school noticed that I was sort of staring and ignoring her, that was brought up. She thought I maybe had epilepsy because I was staring off and she was calling my name and I wasn't replying. But that was a big issue as to whether it was just because I was male or not. So there was a big thing, issue about a panel of doctors that I went to speak to about events to see how that kicked off.
Finlay had experienced 'blanks' for years as a child and after an incident when playing monopoly...
Finlay had experienced 'blanks' for years as a child and after an incident when playing monopoly...
Age at interview: 21
Sex: Male
Age at diagnosis: 11
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I was first diagnosed at the hospital as having something wrong with my brain at the age of 11, but, about two years prior to that was the build up. It was quite a long slow build up and what that would mean is I would have absences, blanks, in what I was doing, while I played, things that involved quite a lot of concentration, like computer games, or reading a book that I was very much into. And I wouldn't be, I don't think it was an absence seizure, or even an aura, but it was almost like suspended animation, I was almost paralysed, but not in a scary way, I was just, I can't move but I don't feel panicked, I'm just like in a kind of a sense of almost asleep while being awake and I would take about half an hour to come out of that. And I was going through that and I, I was quite confused by it, but because I was never scared I never told my mum and that happened you know every couple of months and it wasn't a big deal to me. But then I was playing monopoly one night, and I was doing something quite complicated, I think I was the banker possibly, and my mum said, 'Could you pass me that note,' and I said, 'What note.' And I was like, she said, 'The note that's in your hand,' and I said, 'I don't have a note in my hand.' And I had, I kind of had a stack of like monopoly money in my hand, and I couldn't see it, I wasn't aware that I had it, or what my role was, I was just like, 'What, why are you talking to me, what, I don't understand, I just don't have any money, what, I'm just sitting at the kitchen table talking. I don't understand.' And at that point mum said, okay, go and lie down, I'm going to call the doctor.
Sudden start to the seizures
Most young people we spoke with had their first seizure completely 'out of the blue', with no 'build-up' and no early signs of a possible problem. The sudden start to seizures was more common for people who had tonic-clonic seizures. These people described collapsing suddenly at home, at work or in public. A few people had their first seizure while they were away on holiday and a couple while exercising.
Francesca had her first atonic drop seizure at work; her colleagues told her what had happened.
Francesca had her first atonic drop seizure at work; her colleagues told her what had happened.
Age at interview: 20
Sex: Female
Age at diagnosis: 18
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Actually it happened all rather quickly. I was actually at work with my first, the first time I ever had the experience of a seizure and I sort of felt really weird and I didn't know what was wrong and the next thing I knew I just sort of collapsed and there was the whole staff around me and I didn't have any idea what happened and that was my first seizure.
I remember sort of feeling a bit ill like I was coming down with a cold and then I remember saying to the staff saying I feel really strange and I don't know what is wrong. And they said to me 'oh go and sit down, go and take ten minutes, it is fine, you know, sort of have a rest', and then I sort of headed through to the back room and then the next thing I know I am sort of coming round and I had no idea what happened in between. I had sort of no warning for anything coming on or anything so. But that was the first time and I think at first everybody thought it was like a faint, because it looked similar to a fainting spell but actually it turned out not to be a faint.
And have your work mates told you what had happened?
Well they yeah they did, but because it was just it looked like a faint, they just assumed that I had fainted at that point. The only difference that we sort of noticed was that you can always tell when you sort of feel like you are going to faint and you feel very light headed and a bit sick, but I didn't have any of those sort of feelings at all.
A few people had their first seizure in a GCSE exam or while preparing for them and thought it was likely to be the exam stress that brought on the seizure.
Becky had her first tonic-clonic seizure at home, out of the blue, building up to her mock exams.
Becky had her first tonic-clonic seizure at home, out of the blue, building up to her mock exams.
Age at interview: 23
Sex: Female
Age at diagnosis: 15
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We never really knew anything was, never really felt that anything was wrong. It was just was one of those situations where it was just all of a sudden, everything happened at once, there was never any build up, just, literally it happened one day. one of those typical days, a school day, I got up, got ready to go to school, I was in my final year of secondary school just building up for my mock exams got up got dressed, had a shower, said goodbye to my mum, and the next thing that my mum says she remembers is she came downstairs, she said goodbye to me, she came downstairs and just found me at the bottom of the stairs obviously having a seizure, you know the whole, sort of arms flailing around, you know. Obviously didn't have a clue what was going on, because without, with there having been no build up there were never any, sort of never any mention of epilepsy or you know, diabetes with you know having hypos or anything like that, so we had no idea what was going on. She just called an ambulance and paramedics came and I just, all I remember is just coming round on the sofa with two paramedics sort of next to me and that was how it all started really.
A few simply didn't know or, because of significant memory loss linked to their epilepsy, didn't remember when or how their epilepsy started.
From the early symptoms and first seizures most young people didn't realise they could have epilepsy. Many didn't visit their doctor until after seizures started happening more frequently.
Clair had her first seizure when training for Tetrathlon nationals and she thought it was a faint...
Clair had her first seizure when training for Tetrathlon nationals and she thought it was a faint...
Age at interview: 22
Sex: Female
Age at diagnosis: 19
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Well my first seizure was just before I went to University it was in the summer and I was actually running I was training for Tetrathlon nationals so I can't really remember much about it. I was on my own and I'd just been running and it that was just afterwards and I was walking back to where I, I actually have horses where I keep them, and I fell over and ended up in a hawthorn bush, and I woke up and could just see someone from the yard was just standing there and I managed to stumble back and got home and my mum's like, 'What's gone on, what's wrong with you? Are you, are you okay?' And I didn't really know what had happened so and after about half an hour I was sort of a bit better so, and then I decided I should go to the doctor's really but it wasn't like, ''cos I thought I'd just fainted because that's what I just sort of just blacked out and fainted but so I went to the doctor's anyway to find out what it was and he said, 'Oh it's probably a faint you'll be fine', they did actually x-ray my heart and sort of to see if there was anything obviously wrong, obviously they won't diagnose epilepsy anyway on the first seizure so, so yeah I got on with it and I did my nationals and I didn't really think about it again, and when I went to University it kind of came up that I'd ended up in a hawthorn bush after running and everyone was just laughing about it. Anyway I joined Athletics Club and about a month after I started Uni I had another one, and that was actually at Athletics Club so there were a lot of people around and I was running with one of my friends from Uni and she, so she saw the whole thing happen and they got the ambulance and I went in the ambulance wearing a lot of other people's clothes [laughs] and got into the hospital and I can't really remember much about being in hospital, anything like that.
**Note: Collapsing during exercise can be a serious sign of a heart problem and always requires immediate medical assessment.
A few people realised something was wrong when they had hurt themselves during a seizure. For some, it was parents who got concerned and felt it was important to go to the doctor.
For some people the first few seizures were similar to something else, like fainting, and seizures were dismissed by people themselves, their families and initially by doctors too. A few said their doctors had dismissed their seizures because they had thought that people were faking them or trying to get attention (see 'Routes to diagnosis'). One woman said that for a while, she'd thought her 'funny moments' were just psychosomatic (physical symptoms caused by emotions) and related to stress and lack of sleep.
For most people, once they started having seizures they continued more or less frequently. For a few, after one initial seizure, everything went quiet and seemingly back to normal, only for the seizures to come back months, or even years later.
Gemma had one seizure in class in year Seven but was not diagnosed. Everything went back to...
Gemma had one seizure in class in year Seven but was not diagnosed. Everything went back to...
Age at interview: 17
Sex: Female
Age at diagnosis: 16
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When I was in Year Seven at secondary school I had a pretty impressive fit or faint off of the back of the Science stall. And we went to hospital then and they said that they didn't really know what was wrong, and basically said that I could go home but if it happens that I needed to come again. and nothing really happened for another few years and then I started, having blackouts I'd faint and I'd miss sort of parts of the lessons so I wouldn't know that everyone else had started a new page or something like that and I used to faint quite a lot. And at first we thought it was related to blood sugar which is what initially one doctor said to us and said, 'Oh she'll be okay, when she wakes up give her some sugar and, you know, it's hypoglycaemia.' And then we went to a different doctor who was a diabetes specialist and he said, 'No that's wrong, it's nothing like that.' And then he sent me to a neurologist by which time my seizures were getting a lot worse and I was having more major ones and, what people classify as 'real seizures' even though they're all really as bad each other.
For many, there was a long time between the start of their seizures and getting the diagnosis (see 'Routes to diagnosis').
Last reviewed May 2016.
Last updated May 2016.
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