Epilepsy

Signs and symptoms of epilepsy

Epilepsy is the most common serious neurological (affecting the brain) condition, that affects people of all ages, ethnicities and social classes. One in every 100 people in the UK has epilepsy (NHS Choices 2015).

Here people discuss how they found out they had epilepsy.

Although experiences vary enormously, seizures tend to start in infancy or by late adolescence. Many people we interviewed discussed what they remembered of the events leading up to the diagnosis or what they were told by others.

Discusses the events leading up to her diagnosis.

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Age at interview: 49

Sex: Female

Age at diagnosis: 14

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It's hard to actually say when I first found out I had epilepsy because I was a very little girl and I had older sisters and a younger sister. And I recall we'd been out playing skipping in the street and I can recall thinking there's a very funny smell out here, it's kind of like seaweed. And I said to my sister "Can you smell that funny smell?" She said "Don't be so daft." I said "No there's definitely a funny smell." "Oh you've just got a funny nose." So we all had a bit of a laugh and a joke about it and of course the smell passed and nothing happened, I thought it's definitely me.

And then as weeks passed, and I could've only been about probably five or six years old, and certain words sounded funny when people said them. And the one particular word I remember is the word 'me'. And I said to my sister, not the one directly older than me, the one older than her, I said " Don't you think the word 'me' sounds funny?" Well of course she just laughed.

And I remember getting in the taxi and I can remember getting to my sister's, and I can remember mum putting me to bed because I felt absolutely awful. And the headache was absolutely thundering and I couldn't stand the light and I was obviously very, very unwell. I obviously, I don't know if I lost consciousness or just passed out in pain but it was really, really bad. And the next thing that I recall waking up in hospital and it was in the neurological.

And there was a little girl in the bed sitting opposite me and she was singing happy birthday. Well we'd gone over to my sisters in June and I was 14 years old and I'd woken up on 2nd August, which is my birthday and I was now 15 years old. And this little girl was obviously singing happy birthday to me and I didn't realise this because I didn't know where I was.

Explains that his brother first noticed that something was wrong.

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Age at interview: 31

Sex: Male

Age at diagnosis: 12

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You said you were 12 years old when you found out you had epilepsy.

That's right.

And you mentioned that someone said it could be a form of epilepsy?

Yeah, that was my father.

Right, so did he know quite a lot about epilepsy?

No, it was just basically we used to go camping a lot in France and I was just away. There was an area where they had a couple of table tennis tables, I was away with my brother. And I tended to sort of look up to, sort of like look up, because I think where I had the problems, was up there. And I used to sort of look up to the left a bit, you know. And I was just sort of, go sort of like I say, a trance I suppose, for a little. And then I would be all right. And he, my brother just played the ball to me and you know I didn't do anything.

And then seconds later I came round and he said 'Are you all right?' I said 'Yeah I think so' you know, 'yeah I'm all right.' And I had not realised that I'd had it and he mentioned this to my dad. And you know, and I think I may have had another slight one while I was there and my dad sort of, my dad just said he thought it looked like it could be some sort of epilepsy. I think my dad was maybe a bit more aware than I was that there were different forms of epilepsy. But then we went to [the hospital] and it was diagnosed there.

People often recalled having symptoms for some time before a diagnosis was made. One woman, whose son had epilepsy around 14 months of age, described what happened to alert her to a problem. Another woman remembered having a seizure on the first day of secondary school. Several people discussed how epilepsy was difficult to diagnose and how they visited both neurologists and psychiatrist /psychologists before a diagnosis was made.

Explains what alerted her to a problem in her 14-month-old son.

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Age at interview: 22

Sex: Female

Age at diagnosis: 1

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I understand that [my son], who is 22, and I first noticed that [my son] was, that there was something wrong with [my son] when he 14 months old. He'd had a very bad infection and was running a temperature and I remember going into his room and seeing him lying very stiff, with his eyes rolled up. I wasn't particularly alarmed because I didn't really know what was happening.

Soon after that, a month later, we were on holiday and my mother-in-law noticed that [my son] was going stiff and his eyes were rolling up, and then he would shake himself and then walk off. She thought that was particularly unusual. Being a first time parent I didn't really notice it. But when we came back from holiday we took him to our GP and told her what was happening, and she had, got us an appointment quite quickly to the [hospital] for tests. And by that time he was going stiff, rolling his eyes and then he was falling to the floor. We went to, when we went to the [hospital] we were, we had to go to the Hospital and he had an EEG and we were told he had epilepsy.

Recalls having her first seizure at secondary school.

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Age at interview: 21

Sex: Female

Age at diagnosis: 11

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My very first encounter with it was at the age of 11 when I was, it was my first day of secondary school, obviously I was very nervous at the time. I was in a, in my maths lesson and first of all I stood up voluntarily in the lesson, I couldn't stop myself from standing up, my body just done it. And I just started talking in the middle of the lesson and I was making absolutely no sense at all. I didn't know what I was saying and just started talking gibberish and making no sense at all, and then suddenly I blacked out and collapsed to the ground and blacked out.

And when I woke up I was in the hospital with all my family around me and that was when I was told that I had had a seizure. And this obviously meant absolutely nothing to me. I had absolutely no idea what a seizure was, I'd never been told or even heard about it before and the next thing I was basically told by the doctor was that I would have to go on this sort of tablet which was at the time was referred to as sodium valproate. And that was basically the end of the story. That was as far as it was put to me.

Explains that he was seeing both neurologists and psychologists.

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Age at interview: 51

Sex: Male

Age at diagnosis: 15

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The 'O' Levels came up afterwards and I was very nervous and I fainted and blacked out. The, at the time I was seeing neurologists and psychiatrists. The neurologist said it was a psychiatric problem and the psychiatrist said it was epilepsy. This has happened in later life as well.

...There is an area I'm not happy with because it happened to me and it happens to many other sufferers, especially with temporal lobe epilepsy. Its that the consultants dealing with the epilepsy think that there's a psychological problem, which may well be correct but they send you to a psychologist who then says its an epileptic problem. In various parts of the world the two go together.

Some of the people we interviewed said they were diagnosed with epilepsy as young adults. One woman explained that her husband was the first to notice symptoms. One man described having two car accidents caused by seizures; a third seizure was witnessed by his partner and led to the tests and diagnosis.

Explains that she was diagnosed with epilepsy as a young adult.

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Age at interview: 28

Sex: Female

Age at diagnosis: 19

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When I first starting noticing symptoms I got, I was 19 and at university. It was my, it was my first year at university, I had gone to university in the country.

In which country?

Back in Australia, to a country university. And I started noticing that I had extreme symptoms of what I recognised at the time to be d'j' vu, it felt like d'j' vu but it wasn't just, 'oh I think that's happened to me before or I feel like this is a moment I've had before', it was so strong that it almost lifted me out of the world and sort of stopped me in my tracks. Because I had such a sensation that I was hearing something that I'd heard before or seeing something that I'd heard before, or seeing something that I'd seen before like that.

...So anyway the GP said 'Yes you're stressed,' and I went away and thought well I'd better not be so stressed and three days later while I was at a friend's house I actually had the extreme d'j' vu while I was on the front lawn. It was as if things turned blue, I don't know if that, its really difficult to describe but my vision sort of changed and I had that extreme sensation. And then I went back inside and I had my first seizure which was described to me by the people around me that I sort of, I turned blue and convulsed slightly and was unconscious.

And they called an ambulance, they were all in a very huge panic and I woke up while they were calling the ambulance so it couldn't have been a very long time that I was unconscious for. And then an ambulance turned up, they took me up to hospital and there, I mean I spoke with them about the symptoms and things like that while I was up there.

Describes her husband first noticing symptoms of her epilepsy.

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Age at interview: 31

Sex: Female

Age at diagnosis: 25

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So, I found out I had epilepsy nearly six years ago. What happened was one Sunday evening I went to bed and the next thing my husband - who was my fianc' at the time - was shaking me and trying to wake me up, and said that something funny had happened to me. I had lost consciousness and he literally couldn't wake me up and he didn't know what to do. That was a bit frightening.

So the next day, first of all I thought it was a dream really, but he was obviously quite worried. So I went to see my GP and my GP seemed a bit concerned and said 'I'll refer you to a neurologist.'

...So we [patient and neurologist] chatted about what had happened and then I started to feel a bit odd and I had some kind of funny turn in his office. Although I was, so that was quite fortunate, I was conscious but I remember him holding up his pen and asking me what it was. And although I couldn't, I knew it was a pen, I just couldn't say the right word. I can't remember what I said, it was quite a complicated word, neither of us could work out how I'd got to that word. So once that had passed he said 'I think you've just had another seizure'. And he told me that he was certain I had epilepsy and that he wanted me to go and have an MRI scan to see if there was anything that was causing it. And that was basically all that happened.

Tells how he had two car accidents and then a third seizure which his partner witnessed.

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Age at interview: 26

Sex: Male

Age at diagnosis: 25

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Originally it was March of last year, I was driving my car along a bend. I wasn't, I came up to a junction and I wasn't sure what happened. And the next thing I remember is that I woke up in and there was someone next to me in an ambulance and my car was in a shop window. I got taken off to the ambulance, put in the ambulance, taken to hospital. Stayed in overnight. They carried out a lot of tests on me. They took chest x-rays, checked my blood sugar levels, couldn't find anything wrong. I went to my doctor's on the Monday, 'cos no-one had seen anything it couldn't really say 'It could be this, it could be that' Couldn't give me a definite as to what it might be.

'And then at my, I had another accident in the car, this one was in July. I was driving along and it was just after I left work as well at a quarter past five. Again, I was taken into hospital... I was kept in for, they ran tests on me. Couldn't find anything wrong, I stayed in overnight. Then it was, I went back to work 'cos they said I was fine and then in August I had one at home and my girlfriend was next to me. And because she was next to me, she saw what had happened. That's was when they were now able to diagnose what was wrong. I went, after that I went to see the neurologist the next day and I was put on immediately I was, he diagnosed me with epilepsy from what she'd seen.

Some people discussed losing consciousness and waking up in hospital. One woman recalled having had a stroke and then severe headaches for several months before her first seizure. Another reported that an episode of status epilepticus led to her diagnosis*.

Recalls losing consciousness and waking up in hospital.

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Age at interview: 57

Sex: Male

Age at diagnosis: 30

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Well um, I think about the first attack I had that I can remember was when I was on my way home from a handicapped holiday. Because I used to do a lot of helping with handicapped people through the St John Ambulance, and I was driving at the time and luckily we had stopped at a, you know, a restaurant on the way back, where we normally stopped'

And the next think I know I was in one of these little country hospitals.

Right. What actually happened?

I'd just gone down and, but they gave me you know the once over and everything, and you know kept me there I think for, I think it must have been about an hour maybe. And they took me back to the, they couldn't find anything wrong and they just took me back to the caf' and let me drive home. And nothing else happened after that but I think it must have been oh, ages you know, it might have even been a year and then I had two, I think it was two within about a week. The same sort of thing you know, I just sort of collapsed.

Explains that she had had a stroke and severe headaches before her first seizure.

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Age at interview: 52

Sex: Female

Age at diagnosis: 30

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I'd been having terrific headaches. Prior to that I'd had, in this country, I had had a stroke which had taken me off my feet for a period I would say of about 6 weeks. Slowly getting a little bit better. Been to a local hospital here and seemed to be over that. The only thing was that I had lost sight of one eye.

...So in Monaco I'd suddenly, at this period of time, started to have extremely bad headaches. These went on I think for a good 6 or 7 months.

...I would get up in the morning and my head would be terrible, and a friend who lived in the flats where I was gave me something reasonably hard to take in the way of a medication. She was in actual fact a nurse, or had been a nurse in London some years ago. But even that didn't help.

...We picked up a car and travelled to a particular place where (delete name)[my husband] was obviously going to meet somebody the following morning with a company. I got up with him. My head was even worse and I said to him ' would you mind going and getting something for my headache from reception?' So off he travels and came back. I was sitting in the bath. He looked at me and said 'Here you are [Name]. Aspirin' he said, or something along those lines 'for you take to try and get rid of that head'. I looked at him. I screamed. The glass which he was handing over to me in the bath went from his hand and just shattered onto the floor of the bathroom and I had the most, well, I didn't realise what I was having but I had a very bad grand mal.

Explains that a status epilepticus episode led to her diagnosis of epilepsy.

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Explains that a status epilepticus episode led to her diagnosis of epilepsy.

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Age at interview: 27

Sex: Female

Age at diagnosis: 26

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What I remember is waking up in hospital with all these pipes and needles all over my body, in my veins, my hand, my neck and I had a urine bag. I was thinking why am I here, what's happened. I had my mother, I don't remember all the individuals in my family who were with me but I was saying 'Why am I here? What's happened to me?' I didn't know what year it was, what day it was, what time it was, what age I was, I didn't

know which stage of my life I was in.

How long were you there?

I don't remember exactly, my sister said, I asked her 'How did I come here? What happened to me?' She said it was the last day in my previous house, we were supposed to move out that day and it was in the morning. I went into the bathroom and it was a couple of minutes and then time passed on and I wouldn't come out. They were calling my name and I wouldn't answer. My husband he called me and called me, and then again no answer, then he just kicked the door in. They found me lying on the floor with my head on the toilet. My sister was really scared. They called the ambulance, then she said - this is what my sister told me, I don't remember this - I was taken to hospital and put in intensive care. I was in intensive care for about I don't know, was it two weeks. I don't remember exactly what she said because my memory is really bad.

Although I was in, I had all these machines stuck to me, I was having, every minute, I was having really bad attacks. They monitored my brain waves and they could see that I was having constant fits. They gave me all these various anti-epileptic medications. At first they didn't know what it was that was wrong with me. Gradually they found out. They said they thought it might be epilepsy, at first they didn't know what was wrong with me.

So I asked him, 'Have I got, what is my condition then? Have I got epilepsy? What do you call it exactly? What is my condition?' And he said 'Well what you've got is what your condition, we call it status epilepticus because we don't know how it came about.' Because it just happened all of a sudden in my life. Throughout my childhood, my adulthood, I was fine, I had no kind of illness. There was nothing wrong with me and all of a sudden now I've got epilepsy, so they don't know how to explain it.

Other people were diagnosed with epilepsy later in life. This woman recalled that, although she had been diagnosed at the age of 51, she had experienced symptoms for much longer.

Recalls that she had symptoms of epilepsy a long time before she was actually diagnosed.

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Age at interview: 53

Sex: Female

Age at diagnosis: 51

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I have apparently had very, very mild petit mal for a very long time. I've been having very odd little episodes for years and I didn't know what they were. I did try asking my GP and basically I got told I was doing too much and I was just suffering from exhaustion. My daughter's first memories are of me unconscious on the sofa not being able to rouse me after she'd been frightened by a cartoon. After these little episodes I would always be exhausted. As I said I went to the GP, asked questions. I had other health problems at the time which probably made it worse. Then two years ago, nearly three years ago, I managed to hit myself on the head moving the furniture around and concussed myself. And after this episode I was having very peculiar things happen to me, not understanding what was going on, walking down the street not knowing where I was, er crossing, walking, I'd be walking down the street and the next thing I knew I'd be standing in the middle of the Euston Road with great big lorries going past me hooting and shouting and I didn't know where I was. I could tell I was in the middle of a road but I didn't know which road. I couldn't even have told you what country I was in or anything.

Eventually I landed up at the Hospital and discussing things with the lady, having scans and other tests, at the end of which they told me I had petit mal.

First seizures are twice as common after the age of 65 than between the ages of 25 and 64. One man described how his epilepsy began at the age of 74.

Explains that he presented with epilepsy at the age of 74.

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Age at interview: 80

Sex: Male

Age at diagnosis: 74

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I'd been taking temazepam for many years and a friend of mine who is not a doctor but who thinks he knows everything, he told me if you stop taking temazepam for four days you'll be so tired you'll sleep. And foolishly enough I listened to him and after four days, I was in Switzerland with my wife and we were just coming down a mountain pass and there was a car waiting for us at the bottom to take us to the airport and I had my first fit in the car. My wife thought I had a stroke actually. And I went to the little cottage hospital in the little town and they looked after me. But then they took me, they sent me to Lucerne where a neurologist took the necessary readings and advised me that it was the sudden withdrawal of the drugs which caused this fit. And that's basically the first experience I've had.

Yes, and how long ago was this?

This was five or six years ago.

Six years ago, how old were you at the time?

Well I'm 80 now, so I was 74.

People also noted that the time from symptoms to diagnosis can be long or worrying, and discussed the tests used to diagnose epilepsy (see Diagnosing epilepsy).

For more information sources see our resources page.

*Status epilepticus is a prolonged seizure or a series of seizures without the person regaining consciousness in between. Status can be convulsive or non-convulsive. Status epilepticus is an emergency and requires immediate medical attention.

Last reviewed May 2016.
Last updated May 2016.