Epilepsy in Young People

At the moment I'm not allowed to have any contraception, apart from condoms because they said basically we can't give you anything until it's controlled. Because like my epilepsy is quite bad at the moment and they are waiting until it's controlled because of the contraceptive pill will interfere with my lamotrigine so I have to wait [laughs].

And how do you feel about that? 

It's not a big problem, really. He understands anyway. He's really good with stuff like that so it's not a problem at all. It's okay.
 

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.
 

I had a long term boyfriend at the time. We were using condoms, and so but I got a, I didn't want to go onto the pill, because I seem to have this thing for forgetting to take medications and also as well I'd been on the pill in the past and it's made me foul. So it was not long like, I think it was like I said two months before that we'd been together and we were still using condoms. And then I did started on Epilim (sodium valproate), and they said you know there's a bit of a worry with the pill and Epilim. And I was like right, okay. So you need to consider other things. I went to the nurse and like had a Depo injection which was horrible like. I think you just need to sort of like see something that helps for you, and come to think of it, I think when I was actually on a Depo injection it did sort of make things a little bit worse. I don't know whether that there is, I don't really want to say there oh, you know there is a link so you know don't go getting Depo injection, injection you know if you're epileptic. 'Cos that's different for anybody. I was just having a lot of fits at the time anyway. But it just didn't work for me; just totally made me put on weight as well which is something like you know when you're feeling low you don't want to put on weight. 

We tried different things and, I went to a like when I went to university to do my final year, I went to speak to the practice nurse there and she was fantastic and well we were going through the different things like what's the best, what could be the best thing for me you know, I'm in a long term relationship so there's no need, there's no worry of sort of like you know you don't really need to used condoms but you know it's (unclear word) if you do but you know something a bit more long term would be better, so we decided, I've got the coil now and that's, I've had that in for about two and a half years now. It's a non hormonal coil, it makes your periods a bit more heavier but well what I've found anyway. it's been the best thing since sliced bread [laughs]. 'Cos you don't have to take medicine, it's there, it can stay in, and it's non hormonal and it's just to me it's sort of like the best, it's definitely the best way. You've just gotta find out what's best for I reckon.

So you're happy with that?

Yeah, yes I'm dead happy with that.
 

I've always, I mean I don't know other women, I don't know whether it's either you know or you don't know really, but I've always known that I wanted children. Not at that point, but I do want them later on in life and it was definitely the concern of. You hear certain aspects of, well it's also common sense I mean, if [laughs], being crude if you think about it as an oven if you're sort of baking a cake in a shaking oven it's not gonna work very well. So it's, it was at the very forefront of mind so I was always wondering about aspects of autism or maybe deformities physically in a baby. Then it was a very big fact of would I actually have children, if there was chances that I would have that, and being female I felt that I had to deal with that at a very young age. Like you shouldn't have to think about stuff like that because I've always been interested in it. I did get told that I can't remember the exact statistic that, but I did get told that well being epileptic I was at higher risk of having an autistic child, but only I think it was only slightly, but that still brought concern to me. And there was also the fact of have I got what is it, forgotten the word, sorry, you get it through families, hereditary, that's it, so have I got hereditary epilepsy as well. I mean, the only other person in my family with epilepsy was my father's sister, and that wasn't due to anything hereditary, but she had learning difficulties, which she had it as well, and died at a young age so I never actually met her, but that was the only other person.
 

There was nothing nice about being pregnant at all for me cos it was just a worry, because of the epilepsy. Although my dad says he can remember when I was pregnant I had less seizures. I can't remember, but my dad said you actually had less seizures. We talked about it a few weeks ago, and he said that you did actually, so whether that's a hormone thing or, he said I actually had less seizures. Although when I was six months pregnant I fell down some stairs, had a fit, fell down some stairs. I didn't know, again I was oblivious to it all. My husband said, 'Come on, we're going to the hospital.' But she was fine anyway. She bounced out a healthy 8lbs 10. So yes she was absolutely fine, but that was quite difficult. But I did it. I was really well, I was really well looked after by you know my hospital, I had a lot of scans, you know, they was really good, I can't fault the national health service there, they really looked after me really well. So I think anybody that was thinking about having a child, it's not awful, you've just got to go and get the right help, and say, this is what I want to do, you know, then they'll guide you, well I was lucky I was you know guided in the right way, and I got all the right help.

But it was such a worry, it was such a worry, oh it was a horrible nine months, it was such a worry. I just wanted it to be over. Not the pregnancy itself, but the epilepsy with the pregnancy. Then when I fell down the stairs when I was six months pregnant that was a bit of a. but like I say she was fine, healthy. I wanted a girl cos I knew I don't want any more, and I had a girl so, that was great. So it's not all bad.
 

I was over the moon. I didn't know, I wanted to know whether I was having a boy or a girl, like a lot of people do, but 'cos she was laid in funny positions all the way through I never knew. So she was awkward from the start. Just like her mum, and then when, when they said oh I'd had a girl I was so happy, I really was, I thought, 'Oh it's all been worth it.' You know all the worrying all the way through and falling down the stairs at six months pregnant, but it was very difficult after as well. Because I've always been, somebody who has needed my sleep and as you know you don't get sleep when you've got babies.

So getting up and down in the night was difficult. Because again because of my tablets I've always been a good sleeper, I've always been ready for bed at a reasonable time. So that was quite difficult afterwards getting up and down in the night. I mean my husband was good. For nine weeks I was that sore anyway cos of the caesarean but my husband was really good, he you know he did a lot of the getting up and down, but that was difficult as well. I mean I feel that really [daughter's name] has only, she's just turned four, and she's only really getting, just getting my full attention now.

I feel that again the epilepsy sort of took the first, the most important years of her life away from me because I couldn't be as responsible with her as what another mother could. But now I've got my chance to make that up to her, so I mean I do feel that the epilepsy's took them years away because again everything was focussed around my health and my illness. But again it can only be the better for both of us. I mean I took her, about a fortnight ago I took her on a bus on my own in town, and we had lunch in a pub. She thought it was absolutely fantastic, 'I've been to the pub dad I've had, no it was breakfast actually, and I've had breakfast with mummy', but things like that I could never do before.

Because of the tablets I'm tired. So that means I ain't got no patience. And you need patience with children. Having the epilepsy meant that I couldn't take responsibility for her, because I couldn't take responsibility for myself so how could I take responsibility for somebody else. So that was a big issue in itself, not being able to take her to the park, again it goes back just to doing the normal things that parent's should be able to do. Taking her to the park to feed the ducks, taking her to the shops, you know yeah I can do all them things now, but when she was a baby I couldn't. Not on my own. Because I would be worried. You know I'd worry about just going to. Like I say, I haven't being going to the doctor's without having a fit, you know it's just so, epilepsy is very unpredictable, you know you can be all right one minute and then you're on the floor the next. And that's where again you live your life on the knife edge, so I found it difficult to be relaxed I suppose. I'm more relaxed now. But that took a while to just be relaxed. You're gonna be okay you can walk out the door and just do normal things so like now when I do things with [daughter's name] it's great. Because I can just do them and I can just do normal things you know like taking her in town and you know taking her to, I'd be no good before taking her to the park because if I had a fit I'd be in the lake you know. And where, where would she be'So my husband did a lot really the first two three years. You know he sort of took a lot of the responsibility, because you know he didn't have epilepsy and I did.
 

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.