Becky - Interview 09

Age at interview: 23

Age at diagnosis: 15

Brief Outline: Becky was diagnosed with tonic clonic epilepsy at 15. She is on topiramate 100 mg per day and her seizures are well controlled at the moment.

Background: Becky is 23 and unemployed at the time of the interview. She lives together with her partner. Ethnic background / nationality' White British.

More about me...

Becky is 23 and was unemployed at the time of the interview. She was diagnosed at 15 after having a tonic clonic seizure completely out of the blue. At the moment her seizures are well controlled and Becky is on topiramate 100 mg daily.

She says epilepsy doesn't affect her life much at present. Becky makes sure she gets plenty of sleep to avoid seizures and sticks to her safe limits with alcohol. Earlier on, the seizures were also brought on by having her period so she now tricycles the pill and has her period only four times a year. Becky's partner is very supportive of her, especially after a seizure when she feels very upset.

Becky has read a lot of information about epilepsy out of her own initiative as she has not been given enough information otherwise. When she was younger she said she was frustrated with doctors who at clinic would talk past her to her parents. She says it's important for doctors not to regard young people as stupid and to give them proper information.

Becky and her parents are actively involved with the local Epilepsy Action support group in raising awareness about epilepsy. Becky says it is really important for support groups to realise that the same things won't interest an 18-year-old and a 68-year old and they should plan activities that genuinely interest young people and make them feel welcome to join. 

Becky is just about to move abroad to do a course in teaching English. She said having epilepsy hasn't affected her decision to live abroad, she just makes sure she has proper health insurance cover.

Becky has been involved in fundraising, lobbying and awareness raising activities.

Every year we have, 'Out in the open' which is a sponsored walk, so we do that every year which is around a place called [place name], which is a big country house and we do a big sponsored walk around there, we also do, every year we set up like stalls and stuff around the city centre and [laughs] last year we had t-shirts made. The our epilepsy nurse had t-shirts made that said, 'Epileptics do it in a fit of passion.' I don't know, it's not everybody's cup of tea, but she thought it was hilarious. And she would stand in town and like you know, get out leaflets trying just to stop as many people as possible, you know, try and, cause we've got like, I think she has, just in her hospitals' catchment area, she's got about five thousand, five thousand people with epilepsy. And we have, I think fifteen people come to our meeting. If you think there are that many people, think of how many people we could help and there are only fifteen people coming to the meeting, and I'm like, 'That's crazy. There are so many people in our area that we could help.' So we do that and then we, lobby like our councillors to get all the acts put through in parliament, and, we go around to schools, sometimes, like with the education packs, and the doctors, we sent out all the better, the epilepsy packs out to the doctors because they should be doing so much more, you know cause they, the doctors actually get, they get money, they get special money given to them to, you know, designated to treat people with epilepsy and they're just not doing what they should be doing. So we made sure that we gave them the packs that tell them exactly what they should be doing and, we go to the panto every year as well, at Christmas, that's quite funny. Yeah, we're trying to organise a pub quiz as well just so I can get my mates roped in. Because, a lot of the group are like quite a bit older and they want to do like things that I'm not really interested in, like, tours of country houses and things, which doesn't really interest me, so I thought there's a social club up the road that me and my partner go to, and they've offered us, offered us their room, their function room for free, so we're gonna get all my mates round and have like a pub quiz and we've got loads of prizes from like, donated from the local businesses, like the cinema and the restaurants, and stuff, so we're gonna have like a raffle, and an auction, and stuff like that there so yeah. But we've got to try, and we're gonna try and do a bit more this year.

Becky can totally rely on her partner. He often comes home from work if she has a seizure on her own during the day.

Because of the way we met like over the over the internet, 'cos we talked a lot. We talked on the phone for about nine months before we met, obviously he knew I was epileptic before we met, so it wasn't something that like I sprung on him or anything like that. It's kind of a weird way to start a relationship but we kind of knew each other inside and out before we met, so I kind of just felt completely comfortable talking about it, and everything and it was never really an issue then when we met and when we got together. I suppose again because I wasn't having them every day it's not, you can't, you kind of really, you kind of forget that I've got it in a way, it isn't an everyday occurrence. But obviously it's incredibly important that I know that if I do have a seizure that I can rely on him to sort of look after me and make sure that everything you know that he's here. I mean it's got him in, not into trouble I suppose, but he's on certain stages at work because he's had to come home a couple of times and not because he's needed to, I could've managed, I could've put myself to bed. But because I do get so upset, like when we lived in [city name], like the first thing I always think to do because I'm so upset when I come round. I remember managing to get to the phone sort of and cause I'm so upset you know the first thing you want to do is you want a cuddle or something, the first thing you think to do is like to ring like the person that you wanna be with, so I sort of ring work and sort of say, 'Oh, I think I've had a seizure.' So he'd be like, 'Right, I'll come home.' So he'd be on like certain stages at work and get like compassionate leave or he'd get told off, or, cause he'd sort of say, 'Right, Becky's ill, I have to go', which is always good to know. Because, you know there might be some people who'd be like you know I can't come home because I'm gonna get into trouble at work, but he doesn't do like that.

If you're in a relationship with someone who'd be like, for example as I was talking about in a meeting before about people who we have at the epilepsy meetings before, people who would see me as a burden or someone who would be like, 'Oh, well we were gonna go out, but, Becky had a seizure so we couldn't make it and'' and stuff like that, that would be a nightmare. Or someone who, 'Ah, well I'm in trouble at work again now because I had to come home because Becky was ill.' And it's never like that, and it's never been like that and it's never been a factor. He always stays, if I'm ill he always stays with me and he'll bring, because we've got bed chairs, you see, little bed chairs, so obviously if I've had a seizure I'm always usually on the floor, so he'll bring in the bed chair and put me on the bed chair on the floor. And then just sit by me on the floor and he won't leave you know, so it's really good. It's always nice to know that.
 

The nurse was joking with Becky during her MRI.

I remember when I had the first one, when I was first getting diagnosed I was sort, 'cos I know a lot of people are sort of like very claustrophobic and stuff and I was just, I was loving it. I remember she was, this woman thought it was hilarious, and she was going, 'We're trying to take pictures of your brain Rebecca but we can't actually find anything.' And she thought it was hilarious and I was like, 'Yeah my love, it's fine.' They just tried to make as you know funny as possible, but yeah I think I found it all quite exciting to be honest.

Becky wants to visit her friend in Japan but doesn't feel confident about going on long-haul flights on her own. She knows from experience that these would trigger her seizures.

With regard to travelling, I can't, I wouldn't really feel confident doing long journeys on my own. Like with the forthcoming trip of going to Prague that's fine, because it's only a short distance. But as I said before one of my friends is working in Japan and he sort of said, 'Oh you know, you'll have to come out and visit us.' Which would be great but there's no way that I would go on my own. I would kind of be tied to the fact that, obviously there's a lot of my friends that wanna go, which is fine, but I'm kind of tied to the fact that I'm only gonna go if my friends are going cause there's no way that I feel confident going on my own because I know for a fact that long haul flights trigger my epilepsy. So that's a bit of a pain because it would be fabulous to jet off you know on my own, and say right I'll go and see my friend cause I know that none of these people are gonna bother saving the money, and you know I know they'll never do it, they'll all go out and drink it away. But I just wouldn't feel confident doing it, I couldn't. So that affects it but then travelling, long haul flights is not something that you do every year, so it's like once every, I dunno, once every ten years I'd think for me I suppose.
 

Because Becky is more likely to have seizures during her period, her doctor advised her to tricycle her pill so she only has periods four times a year.

For the first couple of years, I practically almost always had my seizures first thing in the morning and when I was on my period. So, I don't know whether it's because you always feel a bit more sort of, not, I don't want to say weaker, but you always feel a bit more sort of, you know what I mean, you always feel a bit more rrrr, don't you, that sort of time of the month, and I don't know whether that's maybe because, cause of that you just always feeling a bit more sort of you know, down, weaker, that kind of thing.

Do you plan things like around the time of the day that, you wouldn't have anything important in the morning, or you would not travel around your period time, or do anything that would put you at more risk?

Not so much any more because now I tri-cycle my pill. So I don't have a period very often which was advised by my doctor, she sort of said to me you know if, they said to me if you were, if that's the risk, you know, if the risk is that you know it's more likely when you're on your period, just tri-cycle your pill, so you only have a period every three months, less risk of a seizure, makes perfect sense I suppose.
 

Becky fell asleep during the EEG and found the different tests quite exciting.

I remember the first EEG I had, I fell asleep [laughs]. I remember that one, that's the one with they stick them all over, and they flash the strobe light. I fell asleep during that one. I think I fell asleep during the second one actually as well, yeah, they really don't bother me. Stuff like that really doesn't bother me at all, I've never really been bothered by like hospitals and tests and things like that. If I'm honest I probably found it all quite exciting I think. I'm probably one of those people who found it quite exciting. I quite like being the centre of attention, things like that. Yeah, fell asleep during my first EEG.

Becky says she can't think of anything more stupid for someone with epilepsy to do than take drugs.

I've never taken anything along like the lines of like hard drugs or anything like that. But a lot of my friends, well I'd say a lot of my friends, practically all of my friends take things like Coke, cocaine, a lot of speed, pills, things like that. I've never felt under any pressure to do anything because I'm the type of person, I'm not one of those people that bows to pressure anyway. I just always think that it's never really appealed to me, because I've always just found it far more amusing to sit back and be the sober person watching everybody else. And secondly if you've got a condition like epilepsy, the majority of the time, half of these people I mean they don't know what they're taking anyway. I mean you see so many stories where people don't know whether they're taking, I dunno, soap powder or you know the actual drug that they've bought, or anything. They don't even know what they are taking, so if they don't know what they're taking, how are we gonna know how it's gonna react with our anti-epileptic drugs or how it's gonna affect our epilepsy at all. So I just think that with a condition like epilepsy I can't think of anything more stupid to do than a drug like speed or ecstasy or cocaine. I just can't think of anything more stupid to do.
 

Becky got the diagnosis when she was 15 and she was happy she was not photosensitive and could still go clubbing.

Then obviously because it was private the doctor came around to my house to give us the results, and he had said that I had epilepsy. I remember actually not being too bothered really, because he said to me you haven't got photosensitive epilepsy, and I remember at that time thinking, 'Oh fabulous, I can still go out clubbing.' I suppose at the age of 15 that was a pretty immature thing to say, or to think, but at that point that was what my life, that was what my life revolved around, you know. I was 15 and all I wanted to do was go out and have a good time with my friends. So at the age of 15 when they told me that I just thought ah that's fine, as long as I can still go out to the clubs and stuff I don't really mind. But they said that I didn't have photosensitive epilepsy and that my epilepsy was triggered by stress, and over tiredness excessive amounts of alcohol, things like that.
 

Two years after her diagnosis, Becky started having auras; a pain on the bridge of her nose. Her doctor told her this can happen because epilepsy can change with age.

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.
 

When Becky was at Uni it was sometimes difficult to keep up with others. There was something going on every night and she had to pace herself with socialising and drinking.

I'm at a time in my life where I've got a partner now where we like sort of stay in quite a lot now, and a lot of my friends are at that age where you know they've got boyfriends so we stay in and watch films or our social life involves like going out for meals or going to the cinema, so we're not, you know out drinking and you know, out till like 4 or 5 o'clock in the morning, but when I was like 16, 17, and at Uni especially, that was quite difficult because we were, you know, out all the time and I mean university like every night is a night out, like Monday you've got something, Tuesday you've got something going on, Wednesday, every single night of the week, there was something going on so you were out every single night of the week you know. I hope my mum doesn't see this because obviously we did do work [laughs], well there was work to be done. But yeah there was always something going on, so that was difficult, but, one of the girls that I lived with was diabetic so she had obviously it's not, it's not the same as epilepsy but there were similar risks so we sort of like, we, there was someone else who I lived with for the same, for three years, who had similar risks, risk factors as me so, excuse me, we had, it was it was good to have someone there who you know, we, she wasn't allowed to drink too much cause you know she, too much sugar and she didn't stay up too late, and so it was good to have, I had someone there who you know we sort kicked each other into touch and things.
 

Becky's workmates have always been supportive and 'watch out' for her.

I was working with two of my friends and I was a bit naughty and I was doing a night shift which I shouldn't have been doing but I was very skint at the time. I was doing a night shift, and I obviously can't always tell when I'm gonna be ill, you know, and I'd gone to speak to somebody and I came back and I was trying to tell my friends, my two friends the story, it was two of my closest friends I was working with. They were looking at me, they were looking at each other, and they were looking back at me, and I was like, 'What?' And they were like, 'Becky you're not making any sense', they were like, 'You're talking absolute nonsense.' And I was like, 'No I'm not, I'm making perfect sense.' And they were like, 'No, no, you're talking nonsense.' They were like, 'We think you need to go home.' And my night shift was like from half past ten at night till about six in the morning or something, and it was going fine you know for weeks I'd been doing absolutely fine and I was getting a bit cocky and I was like, 'Oh yeah, it's fine. I can do a night shift.' But they said to, and they said to me, 'No,' you know, they said, 'You need to go home, your eyes are going funny, and you're not talking in proper sentences,' and they both sort of went and spoke to my boss and they said look you know, she needs to go home and they sort of sent me home and put me in a taxi. And one of my other housemates put me to bed, they're pretty good, most of the time. Whenever I've got a job I always make sure that I tell my bosses and things like that because I always think that it's just not worth lying about it, because if something does happen and nobody knows then you're screwed really, it's always best to make sure. But everybody I've worked with has always been really good, and I've never ever had a seizure at work when I've been employed. Like I said my friends have always been really good and they always watch out for me, so, other than when I was at uni. But everyone else has always been really good.

Becky had her first tonic-clonic seizure at home, out of the blue, building up to her mock exams.

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.

Becky feels disorientated, groggy and really upset after a seizure.

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.

Becky says people have a right to know about all the risks related to their epilepsy, including SUDEP.

I think you should definitely still be told, 'cos if you're diagnosed with some sort of condition, you should be told about all the risks involved with that condition. Because well, you have a right to know of everything connected to that condition. That's just what should happen. Yeah, you should, when you are diagnosed with something like epilepsy or diabetes or you know, anything, along these kind of lines you should be give a big wedge of leaflets and you know, a DVD whatever, that says exactly everything that explains exactly what you've got, exactly all the different types of epilepsy. Even if you've only got one specific type of seizure you should be told, you should know exactly what all the different types of seizure are, just in case your epilepsy changes. Like for example when I was running around the house, I mean that was a type of seizure that I didn't know. And you should be told about things like SUDEP, you should be told about absolutely everything, you should be told about all the support works, networks available to you, everything, absolutely everything, regardless of how big or small the risk is. You should be told because you need to know that it is a risk, either way.
 

Becky was offered an antidepressant but she didn't accept them because her doctor couldn't tell her if they would be safe with her epilepsy medication.

I had quite bad depression and they wanted to put me on antidepressants, and I said to them, 'well okay that's fair enough, but obviously you have to be careful because I'm on antiepileptic drugs'. And the doctor said to me, 'Are you?' I was like, 'Yeah. Yeah I am, yeah. See my notes in front of you? Yeah, that'll be an epileptic patient you've got there.' And [laughs], this was the first time I'd seen this particular doctor and he said, actually what he said to me, this was, this is great, he said, 'I want to prescribe these antidepressants for you.' And I said to him, 'Right, but how will they, are they compatible with my antiepileptic drugs?' And he said, 'I'm not sure, take them and see.' That's actually what he said to me, 'Take them and see what happens.' And I said, 'No, I'm not going to do that [laughs], I don't think that's particularly a good idea.' So I didn't take those, that wasn't a good idea. But when I moved back down to [town name] I had a much better doctor and, she was much better, and worked out different kind of tablets and stuff. But from that point of view a lot of the time it has been a case of finding things out for myself, just because, I don't know whether it's just because doctors aren't specifically trained in any particular field, I mean doctors, GPs have to cover everything don't they. But then at the same time I'm seeing an epilepsy specialist, or a neurologist and even he had to think; even he had to flick through a medical dictionary so I don't know. Yeah, a lot of the time it's been a case of finding things out for myself.

'Take them and see.' It's just something that you don't expect a doctor to say. It's like what about if they' 'Take them and see.' What about if I. I mean what if I'd taken them and they'd completely clashed with my medication and I'd had a seizure and fallen off a building somewhere you know? It's crazy.
 

Becky says young people's support groups need to do things that actually interest young people and meet in a nice cafe or pub rather than a church hall.

The reason I didn't go to the young persons one is because, because the age was so vast, I think it was like from, excuse me, from like I think it was like from something stupid like 11 to 26 or something, now that's just madness, an eleven year old doesn't want to do the same thing as a 26 year old. And that's the problem, and then you've got the same problem with this group now, I'm 23 I don't wanna do the same thing as this you know particular woman who's like 65. We don't wanna do the same things; I don't want to go to Lady Nancy Astor's house. You know, I don't want to do that. So I think that's the problem, you need to have, you need to have something where you need to have maybe a kids' group, and then a young persons' group where we can, maybe a young persons' group where you can you know go bowling, or you know, rather than meet in a Church Hall, you wanna meet in like a pub or something, I mean, you can't necessarily drink, but you know, just it's not about drinking it's about being in a social environment, you know like a caf' or something, or you go bowling, or you can meet up in, I don't know, anywhere. Just go to a comedy club or something, you know. Go for a, have your meeting at a meal, and then do something sociable afterwards, that that's what it needs to be, 'cause sitting in a church hall, talking over each other and that's not to me what a support group is, a support group should be people who are friendly, people who are welcoming, you know what I mean. But that's what the problem was I think, is that they were trying to encompass too many people in one bracket, I think.