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.

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.

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.

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.

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.

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.

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.

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.

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].

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.

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.

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 whove got it anyway. I’m quite lucky.

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.

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.

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.

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.

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].

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.

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.