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Epilepsy in Young People

Charli - Interview 28

Age at interview: 23
Age at diagnosis: 18
Brief Outline: Charli was diagnosed with tonic clonic epilepsy at 18. She started taking lamotrigine a while after she was diagnosed, after she had a few major seizures. She has now been seizure free for two years.
Background: Charli is 23 and full-time mum. She lives with her son who is four. Ethnic background / nationality' White

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Charli is 23 and currently at home with her son who is four. Charli had her first seizure at 16, in a GCSE exam. This was treated as an isolated incident, thought to have been caused by her having stayed at a computer for a long time. She didn't have any tests until she had two more seizures a while later. At this point Charli had an MRI and was diagnosed with epilepsy.

When she got the diagnosis, Charli says she “cried for weeks” because she felt she “wasn't normal,” anymore and felt embarrassed, also because she had had a seizure in public. Charli says in the beginning she just "didn't care" and she didn't take her epilepsy medication for a while.

Soon after being diagnosed, Charli got pregnant with her son. Her pregnancy went really well and she had no problems with epilepsy. She was "blooming" and gave birth to a healthy baby boy. Having a newborn didn't stress her out and in fact she wasn't even thinking about her epilepsy. Now Charli's son is a little older and she has talked to him about her epilepsy and explained to him "in baby terms" what happens to mummy when she has a seizure.

Charli says epilepsy has changed her in that she has become more anxious and worried, mainly about the possibility of having a seizure. Charli says for her it is "mind over matter"; the more she worries about having a seizure, more anxious she gets and then more likely she is to have seizure. She keeps herself busy thinking and doing other things which helps. She says she also avoids crowded places because they make her anxious.

Charli's mum lives abroad but she has a good family network locally to support her and great neighbours and friends. Charli has many friends with small children so they go to the park and kids' clubs together. She also enjoys her own time, keeping fit and going to the gym most days of the week. She also enjoys going out with the girls and says she just hopes she won't have another seizure in public as she finds it really embarrassing. Charli's future plans include starting a course in midwifery and helping “deliver babies for the rest of her life”!

 

Charli's on lamotrigine and the combined contraceptive pill. Her doctor suggested increasing the...

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The doctor did give me a list of all these things that I can and cannot have. There's certain things I can't have. I can't have the patch because the lamotrigine can affect the effectiveness of it. I was gonna go up to a stronger pill, I'm on the combined pill, Microgynon 30 which has got 30 milligrams of the drug in, she was gonna put me up to fifty, so it was a slightly stronger dose, but because there's not much tests been done on this, I mean there's been a few but not that much research has been done into it, so she said, 'To be honest I wouldn't worry about it.' Because I was worried about putting up my dosage of, up to 50 milligrams I was thinking, 'oh no maybe I might get spotty, and might put on weight', 'cos with the pill obviously those are the side-effects. And if I upped the dose, then I could have more, increased chance of getting fat and I didn't wanna [laughs] put on any weight or get spotty. So I'm glad that I could stay the same 'cos I've been on it for about five years now and within the last three years nothing's happened so, ben alright. I've been on that pill for like the last five years and for the last three years I haven't fallen pregnant and I've been on that pill, I've been taking my epilepsy medication as well as, like you know [laughs], and I haven't become pregnant so it must be working. I don't think there's any chance, any need to increase it. But there was certain ones I can't take being on that medication, but that's it.

 
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Charli has had anxiety attacks only after her most recent, severe seizures.

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Did you have panic attacks or anxiety before you had epilepsy?

Mm-mm, no way, even after I was diagnosed with epilepsy, up until the most recent fits last year, which were, they've been like the most scary ones, the most severe ones. I was fine, I'm so confident, I'm usually really confident, outgoing, bubbly, energetic, bouncing off the walls, like, so it has affected me I mean in that way because I don't think I'm as bubbly and confident anymore as what I used to be.

So you think it's affected your confidence a bit, or a lot?

Not a lot, a bit. I mean I'm still bubbly, when I forget about it, I'm fine and get on with my normal life and being myself and being bubbly and still being like that. But I dunno I think it has, obviously it's affected me a little bit. Because I'm worrying about it, and when I'm worrying about it obviously I'm not my bubbly self yeah I suppose so. It's a shame really, so I'm just always so lovely [laughs].

[Laughs] Part of the process I'm sure as well, like you were saying that you feel like you're getting better now?

Yeah, yeah I do, but then I have certain days when I feel, a bit weirder than the other, depending on how I'm feeling, if I'm a little bit stressed out. Like I said I'm a worrier, so the little things worry me, money, bills. Like I don't get a lot of money so I have to really scrimp and save and sort of make sure everything gets paid and so I am worrying a bit about money. But I try not to let myself get stressed out.

 
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Charli enjoyed being pregnant and felt really healthy.

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My epilepsy really wasn't a big problem when I was pregnant, really, really wasn't. I didn't even think about it, I was just so happy that I was pregnant, it never really came into it, I don't think at the time when I was pregnant I was on my lamotrigine monotherapy. I wasn't taking any medication at all for my epilepsy because, well I fell pregnant in 2002 and had my son in 2003, basically after I had been diagnosed that I fell pregnant. I think with all the kafuffle of being pregnant and everything else I didn't take my medication. I was pretty bad in the beginning actually I didn't think I needed it, until I had like a couple of major seizures. But yeah it was fine, I didn't have to take any precautions, like I wasn't told to take folic acid because it wasn't really mentioned then about my epilepsy and my pregnancy, do you know what I mean.

But it wasn't really a big thing, because it had just sort of been newly diagnosed and I hadn't had the fit, a fit for ages before I fell pregnant. But like I said now if I was to get pregnant again I've been advised all different things and I'm not looking to have another baby for a little while, don't worry about that [laughs]. But yeah I didn't really think about the implications of having a child and having epilepsy, because my fits were so irregular and not very frequent. I didn't really think it'd have a major impact at all and we was fine.

No I was okay actually during my pregnancy I didn't have morning sickness, I worked up until I was about eight months pregnant in the bank still. I enjoyed being pregnant, I bloomed when I was pregnant I did it really lovely, my nails were lovely and strong, my hair, I had a good time being pregnant actually [laughs]. Yeah but it wasn't affected by my epilepsy at all, and that didn't affect my epilepsy at all so, yeah. If anything I was probably more healthy during my pregnancy, I looked better, felt better, more relaxed and everything.

 

Charli gets stressed and anxious about the possibility of having a seizure.

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It's just stress really, like I mean I've had a couple of stressful patches over the last year and like stressful patches relationship-wise when I stopped eating and really didn't look after myself very well. But the stress can make you feel very anxious and it's not nice, 'cos you just feel on edge all the time and you feel like 'oh am I gonna have a seizure? I don't wanna go out because I might have a fit', like on the street. There's been times when I've been walking in like department stores looking at clothes and it's all just got too much for me. And I started feeling strange and I just had to get out but I really need to start sort of not thinking about it as much because even now I still think about it a lot, like a few times a day. But I need to start to forget about it, I might go and see my, we have an Epilepsy Nurse at the hospital which I go to, and he's really lovely, he's a really nice bloke. And if I do have any problems I can always ring him, or go and see him, so I think I might go and have a chat with him soon. Book myself an appointment and go and have a chat with him about the anxiety, and whether he can suggest anything. Because it's not a nice feeling when you feel like you're gonna have a fit, and you're worried about it and but it's just, ah it's a strange one.

Is it constantly thinking about it?

Yeah just, just worrying about it really. Just worrying that it's gonna happen, and who's gonna be around? Is there anyone gonna be around and when you have it to help you. But I worry for nothing, I'm a bit of a worrier anyway so I think I'm really worrying for nothing but I need to get my head round it is nothing and I'm just worrying unnecessarily. So he might be able to help me with that and I think it's just taking your mind off of it. I think if my mind's occupied with stuff, I'll be alright but it's when I'm not doing anything and my head's reeling thinking about things, yeah.
 
 

If Charli drinks more than she should she feels like a seizure is coming on.

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I do have to watch, be careful of my drinking 'cos I find in the morning after, if I do go out and have a bit of a heavy night, in the morning I'll feel weird. That's my way of saying that I feel like a fit's gonna come on. Sometimes like I said earlier it could be mind over matter where I'm anxious about it, if I know I've had a couple of drinks that night before, mind over matter kicks in sometimes and I think 'oh I feel weird, I feel weird'. I probably don't, I'm just thinking it, I'm making myself feel weird. But yeah if I do go out and do have a bit more than I should have, I do sometimes feel a bit strange in the morning and so I tend not to do that. But all my friends like are aware of what goes on, and everything so, they know what to do if it happens.

 

Charli describes how she explained to her 4-year-old son what epilepsy is and how 'mummy's brain...

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I said to him [her son] that mummy has fits, I told him that word because it was a short word and it's, and it's easy to remember. I said, 'mummy's brain gets all fuzzy, and I said, 'You know what happens on the telly when, when the telly goes off, it gets all fuzzy.' And I showed him the picture of the grey fuzz on the telly, and I explained to him that's what goes on in mummy's head. I said, 'My brain's stopped working and goes all fuzzy for a little while, and then I'm fine.' It's a bit worrying, that I had to tell him that but he took it alright and he sort of understood. And I said to him, 'You have to, if mummy has a fit on the floor, you must hold mummy's head and keep it as still as you can so it's not banging around or banging on the floor, or banging against anything. And he said, 'Okay mummy.' He didn't really have a lot of questions to ask, I think he was just taking it all in. and he hasn't mentioned anything about it since apart from to his dad when he said, 'Oh I'm worried about Mummy having fits,' But he was okay, he's a really bright little boy. I would, I'd be happy in the knowledge that if anything did happen he would know what to do. I've also taught him how to call '999' and ask for the ambulance, and I've taught him his address recently so he knows his address. so if anything happened I suppose he could tell the ambulance yeah I'm proud of my little boy [laughs].

He's good. I just worry about him worrying about me that's just one thing that I hate the thought that I'm putting worry on my four year old son about my health it makes me feel really guilty but he's alright I'm sure he's handling it.

 

Charli has a freedom pass which allows her to use all public transport for free. She doesn't mind...

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I did give up my driving licence. I've been fit-free for a year now so I've got it back, but while it was with the DVLA I actually wrote to my local council and got a freedom pass because I needed to get [son's name] to nursery and stuff. I needed to get about basically and because they'd taken my driving licence I didn't have the means to go out to get about, and two pound a pop to get on a bus, and even more for trains, on trams or whatever. It was too expensive for me and I don't have a job, I'm not earning any money so it was like, getting a bit expensive. So I applied to my local council and they gave me a freedom pass which is like little passes what, over 60s get and some other people with health problems. So I'm glad I've got that, so I can get on the buses and trains and stuff for free. Even though I've got my licence back I don't really like driving, it's just that fear of if anything was to happen, and I've got my son in the car it, it just scares me so much. So I don't really drive that often. But that did affect me when I had to give up my licence it was really, I just felt lost without my car. But then I knew that it was important to do that, I had to do that, 'cos it could be dangerous not only for me and my son, everyone else on the road, pedestrians and other road users. Like it made me think and I don't mind getting on the bus especially in the summer like it's not too bad the weather at the moment, I don't mind jumping on buses.
 
 

Charli has had a shower put in her house and explains why she doesn't want to use radiator guards.

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Are there other things you remember in the house except the, having the shower put in? Are there any other practical things?

Not really, I mean I do sort of be aware of like, I've got sharp corners sticking out, and my radiators and stuff like that but, I live alone there's only so much you can do. I mean the radiator guards and all that, you can have that put on but, I dunno, and I don't want them on [laughs].

Yeah, why not?

Yeah it, they, they're not the most attractive things are they radiator guards and the little plastic things that go on the edges of the table. Like I couldn't go that far just [laughs] because I like my house being like it is but, yeah, I mean I have tried to make safety precautions. Before I had, before I actually had the, the shower I used to get someone to come round and just wait with me while I had a bath 'cos I was so scared about maybe having a seizure in the bath 'cos obviously, you've got no chance, you'd just drown, yeah but, that's it really, as, with my house. Sometimes is, there's someone with me, like I make sure, I'll make sure that I've got someone round here like.

 
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Charli decided to resign from her job because she was too worried that she might have a seizure...

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I worked in the bank so I've worked for those five years, I was a Customer Service Advisor and a Personal Account Manager, I really, really loved my job. I'd be talking to people, selling loans and credit cards and everything. So that was like a big thing for me, going to work. But then it started to, once the epilepsy started to get a bit worse and I'd had a couple of more seizures, while I was working, I started getting anxious again. And when I get anxious I start to babble and I used to start talking to customers and forget what I was talking about at certain times and it was just becoming embarrassing. So, actually March 2006, I gave up working for the bank, yeah. That was horrible. I felt like, I don't know I just didn't wanna embarrass myself in front of the customers but I wanted to keep my job and keep my foot in the door. But it was just getting too much for me and I was having days off because I was worried about it. I had a couple of panic attacks as well. And so I gave up work and I wanted to spend the last year with my son, until he goes to school 'cos he goes to school in January. So I wanted to spend this little bit of time with him. but it was good working for the bank, and it never really affected me, like I said until sort of the last year of work when I started becoming anxious because I'd had a couple more fits.

 

When first diagnosed, Charli said she didn't take the diagnosis seriously. She wouldn't start her...

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It did worry me when I first found out I had epilepsy. I just didn't really know too much about it but now I'm better and I'm coping, I know more about it and stuff, well you learn to live with it, and people around me are more understanding, and they understand what to do if I have a fit, so it's just confidence really, and getting your confidence back because it is quite a bit of a knock. But to be honest, in the beginning when I was first diagnosed, like I said, I didn't really care. I didn't really care that I'd been, that I'd been diagnosed with epilepsy like, I was just so ignorant, and it wasn't until like I had a couple of quite severe fits that I realised that I've got to start taking my medication. My self-esteem I think took a drop then, do you know what I mean? When I realised, "Look Charli this is serious now, you've got to start taking your medication", and that's when my confidence dropped and I thought, "Oh like it's gonna be difficult". That's when I started getting anxious and worried about things so it all sort of started from there. A couple of years ago really my anxiousness, at the beginning, I didn't care.

Do you think you just wanted to deny the whole thing?

I think so yeah, yeah, probably, I didn't wanna admit the truth. I was kind of embarrassed I suppose.

 

Charli describes what happens to her when she has a tonic-clonic seizure.

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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 who've got it anyway. I'm quite lucky.

 
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Charli describes the sensation of being 'sucked in' when she goes too close to a TV screen.

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I was actually on a bike, on a riding, on a bike and I just, I think I was too close up to the screen, I'm not photosensitive, so the like flashing lights don't affect my epilepsy, but when I get close up to tellie's, I get sort of sucked in, and this really, really strange feeling. But yeah so, I got, I was close up to these big screens that you can have in front, in the gym, in front of you riding, riding the bike and I fell off, and I think I didn't go to the gym for about a month because I was so embarrassed like, that people had seen me having a fit and, but yeah I went back and everyone was fine. Like they should do, like they should be sorry, but, it was worrying, scary going back there. 'And then the next time was, I was in front of the telly that was it, I was in, in my son's room putting on a film for him, putting on a video and I got too close up to the telly and, that's when I started having the seizure. It's definitely something to do with tellies, it's really strange but definitely the flicker of the telly is, obviously damaging to me in some way [laughs]. It's, 'cos it's really weird. I like get glued to the telly, like stuck to it and I can't move my eyes and I have to physically go, like that, shake it away, it's strange.

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