Rachael - Interview 19

Age at interview: 25

Age at diagnosis: 21

Brief Outline: Rachael was diagnosed with tonic clonic epilepsy at 21. She is on lamotrigine and has seizures occasionally.

Background: Rachael is 25 and full-time student nurse. She is in a relationship and lives in a shared student house. Ethnic background / nationality' White British.

More about me...

Rachael is 25 and full-time student nurse. Before the age of 18 she had a few episodes of passing out which she now thinks might have been epilepsy. After she got pregnant and miscarried at 21 she started having more severe and frequent seizures. After seeing her GP a couple of times she got an emergency referral to a neurologist but the referral got lost. She was finally admitted to a ward through A&E after a seizure and eventually diagnosed with epilepsy at the age of 21.

She was first put on Epilim (sodium valproate) which did not control the seizures -and she was accused of faking them. This made her really angry. She changed onto lamotrigine which did control the seizures. About 18 months before the interview Rachael decided to stop taking her medication. She was well controlled at the time and also - working shifts - found it difficult to remember to take the tablets. After about a year without the medication, she had an episode of status epilepticus and ended up in A&E. She then decided to go back on medication. Looking back on it she says it was 'stupid' to stop taking her medication.

Rachael's not the only one in her family who has epilepsy. Her uncle also had epilepsy - he died from SUDEP at the age of 26. Rachael says that this has made her mum very worried for her and wanting to 'wrap her in cotton wool'.

Rachael says her main triggers are stress, drinking alcohol and being on her period. She says she's a very laid back person and doesn't let many things get to her. Despite her seizures not being controlled, she says she leads a very normal life and tries to do things that she finds relaxing, like playing her guitar and she also loves going to gigs. Rachael's boyfriend found out about her epilepsy when she was taken to A&E after a seizure - she hadn't told him as they'd been together for a month. He's been very supportive and understanding.

Rachael is studying to be a nurse - she says her own epilepsy nurse has been really inspirational and one of the reasons why she wanted to go into nursing. She says what she'd like to pass onto medical professionals is to not only focus on the diagnosis but to, "Look at the bigger picture", and listen to people's own experiences as they “Could learn a lot from them”.

Rachael ended up on a ventilator in an intensive care unit after having an episode of status...

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].

Rachael stopped taking her tablets for 12 months, had an episode of status epilepticus and ended...

Basically what happened was, a couple, a couple of months ago, I hadn't been taking the medication for about a year. I actually stopped it was a bit naughty really, specially being a nurse. I stopped taking the medication just basically because you think I've been controlled for a little bit and I decided that, I kept forgetting because I was at work or you know you're on shifts and you sort of come home and it's difficult to get used to it. When you don't actually have a condition that affects you day in and day out and you don't really see sort of the benefit of it. It just was a thing like okay you know I don't need this no more, you know, I'm fine now, I'll be absolutely fine. So I'd not taken it for a year, a couple of weeks ago we'd been out with a friend, and, I got back and I felt really unwell, and I was like, 'Oh no.' And unfortunately I ended up in A&E which was quite embarrassing because I was working there at the time [laughs], so and the sister said to me, 'Can I have words with you.' And I recognised the ambulance men as well which is kind of funny. Since then like I've started taking it again because you think you kind of realise okay it's a bit naughty really I should really take it. It does help you. But I think some of the side effects of medication as well it can be, it makes you feel a bit rubbish, and it makes you feel tired, and you just feel run down and when you're working so much anyway, you have such a busy life it's not something else you need on top. It was a stupid thing to do really, but like anyone who takes medication you know, sometimes just doesn't take it all the time.

It's strange you sort of like you felt like you were getting better or sort of in a way because you hadn't had a fit for a while and she [mum] was just like oh you know, she said 'But you must take them,' and I was like, she says, 'Are you gonna start taking them?' And I said, 'Yes I am now.' I said, 'I think it's freaked me out a little bit cause my housemates said that I'd got to the point where I couldn't breathe and you know if she hadn't been there, I wouldn't, anyway it would have been eek.'

Rachael's boyfriend found out about her epilepsy after she'd had a severe seizure and ended up in...

I phoned my new boyfriend as soon as I got in [back home from A&E]. I was like you know there's something I haven't really told you 'cos I didn't see there was any point of saying anything. And he was like, 'Oh, what, why?' It'd been a month so I just sort of thought you know, he needs to know, as it seemed to be sort of heading that way into seriousness, eek. I just sort of said you know, I wasn't, I wasn't in A&E because I'd had too much to drink, you know me I don't drink that much. He said yeah, he says, 'You're quite controlled in that way aren't you'? I said yeah, I said, 'There's a reason why that is,' and he was just like, 'Oh why, what's the matter.' And I said, 'I've actually got epilepsy.' And he was like, 'Oh right, okay.' It was like I said, 'Oh you know, I said I'm sorry for not telling you sooner.' And he was just like; 'Rach just don't worry about it, it's fine.' He says, you know, he says, 'I know friends who've got it as well,' he says, 'Don't worry about it, it's absolutely fine. I just had to see you were alright with it.' You know and he says, 'Yes of course I am it's fine, you know, why wouldn't I be, he says, I'm not shallow.' And he said, 'But are you okay?' And I said, 'Yeah I'm fine,' he says, 'Oh, he says, do you want me to come round you know, you know is there anything that I can do?' Bless him. No, you know, you know, I don't want you to see me I was looking I was looking like rubbish. So there are days when I don't really want you to see my like this and you know he was just like, 'Oh okay, okay then, are you sure?' And he says, 'Okay I'll give you a call later anyway.' 

He called later on and checked up and I said, 'Yeah I've had a sleep feeling a bit better,' he says, 'Have you eaten?' I said, 'No'. He said, 'Right I'm coming round and make you lunch,' and he bought me a bottle of 'feel good juice'. "I've brought you a bottle of Feel Good Juice to make you feel good." I was like bless. So yeah he's been really good with it. I feel like it was mistake to sort of burden an ex-boyfriend with it, I've tried to sort of be good with it and everything and plus what with it being controlled and he was just like. He's actually seen me have a fit now and he says he was absolutely fine, he says, 'Don't worry about it, he says you know, you knew it was coming on, you told me, I got you in a safe place, and you're fine.'

Rachael had bad experiences with the pill and the Depo injections but says the coil is the 'best...

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.

Rachael describes the interview and health check-up she had for a nursing course. She was...

I had this interview at one of the universities I'd been offered a place at. I went for the interview, one of my main concerns was sort of like, 'I have epilepsy, am I gonna be okay?' 'Cos I knew that I had to go for a health check and I was just like, 'Oh god I hope it's all gonna be alright.' So I asked at the interview and they were like, 'Oh you'll have to go for a health check, you know so we can't really say anything but as far as we're concerned we're happy to offer you a place.' I was like, 'Yes' and it's quite nice actually because even though there's all this gone on, it sort of like made a really good reason to go to it, 'Why do you want to become a nurse?' And I just had all this like, so I said, 'I feel like I need to give something back, I feel like you know there's a lot of nurses out there that don't really know, are not very empathetic, and I just feel like I really want to make a difference and I feel like I could understand how people feel.' 

I was like, 'I would really want to go and specialise in epilepsy and, and 'cos I think it would be really great to sort of like pass this information back to people who don't really understand what's going on. It would've helped me I know when I was going through everything.' They were just like yeah, we'll definitely take you on; it's great, all from our end. The day came for my medical, I went for the medical, discussed it with the doctor, and he says, 'cos I'd filled out the form and had everything written up before this episode where I'd had my last fit. Where I hadn't like had a fit in a while and he asked me, he says, 'So is this still the status then? You haven't had a fit in a while?' And I just, you know I was just thinking on the train up there, thinking should I say something, or should I lie, 'cos I know it's gonna affect my chances but I was honest and I said, 'Yeah, actually it's really sad because I had one fit the other week but it was under the weirdest circumstances and it was probably brought on by something quite stressful.' And he was just like, 'I'm really really sorry, but I can't actually say,' he says, 'I'm not gonna say that we're not gonna allow you on the course,' he says, 'It's just very difficult, you have to be pretty well controlled before we let you on the course.' He says, 'What I reckon you should do is go back to your neurologist and say you know like I'm on this dose, but I need to be totally controlled because I still have the occasional seizure.'

Occupational Health check came and she was like, 'Oh it's got to be a year before you were.' I think it had been like eight months or so, from when it was December, it was March that I'd had the last fit and it was in the December I was going, going for my final Occupational Health check, before I was starting the course in January. And they said oh you actually need to be seizure free for a year. Which was like, 'Oh here we go again'. And I said, well it's nearly a year [laughs]. And she was like, do you get a warning beforehand? And things like that. 'Oh yeah I do, quite, every single time. Yeah like funny hand movements.' And she was just like, 'That's a plus. Because at least you can get yourself somewhere safe so if you're working on a ward or something.' I said, 'Oh yeah, yeah definitely, I do that anyway.' She said, 'You know your triggers' and she said, 'You seem like you've become quite an expert at it,' and I was like, 'Yes, I guess I have actually."

Seeing a seizure in Hollyoaks on TV, and reading about seizures on the internet, made Rachael...

I was sitting down and I was just watching TV and Hollyoaks came on, and, there was an episode where Stef and who's still in it now I think, she has epilepsy and she had a fit in the playground. And it was just like, 'Oh my God,' you know, this is, this is all sort of, I know it's fiction, but it kind of brings it to light and at the end of the programme it always has those cheesy lines sort of like saying if you have any problems have a look on the internet or look on the web. So I started looking it up and I just thought, yeah this all sounds like me actually, it all sounds like this is happening and yeah, I'd sort of have like episode, I'd have these episodes, I remember having these episodes where things just went black and blurry, and you just see lights and stuff, and I'd mention it to a friend and I'd said, 'Oh that's normal isn't it?' and they were like, 'No. You should go and have that checked out.'

When Rachael had sleep deprived EEG, she drank coffee and watched DVDs with her boyfriend to try...

'We want to do what's called the sleep deprived EEG because it seems that a lack of sleep and obviously as well a bit of stress seems to bring it on for you' I was like okay. That sounds good. He said, 'But you'll have to stay up all night.' 'Oh.' [laughs] okay, it should be quite fun. He was like oh you know continue taking your medication when you go to the appointments and things like that. And he said what we'll do is when we've found out like more if we can pin point something in the EEG we can change your medication to make something more specific for you, maybe for that type of epilepsy if we know. So, it was quite hilarious actually trying to stay up, my boyfriend kept bringing me coffee, he was like, 'Have coffee, let's watch a DVDs', you know. I really wanted to go to sleep and about four in the morning I just said, 'I Just wanna lie down just for a second.' He was like, 'No, wake up.' And trying to shake me and I was like, 'Oh, I'm so tired', and when my mum picked me up in the morning and went for the test and I just, I remember feeling like a bit tingly in my mouth while I was having the EEG and really shattered and just feeling a bit funky, anyway not particularly feeling fabulous, oh you don't suppose anyone would be after having no sleep.

Rachael explains why she felt a burden on her boyfriend and parents.

What do you mean when you said a burden?

I just felt like I was putting on him a lot. We're talking about, we're talking about my ex-boyfriend, like, you know, you're putting on your family because when you're zonked out on the floor you don't know what's going on. But they're like seeing what is happening and you know I've seen someone have a fit now and it is if you've not seen it before it's very very scary, it's very weird the first time I saw someone have a fit, it was, 'Oh my God I do that', [laughs]. But I knew what to do because I'd be telling people what to do for a while, but yeah I just felt like I was, I just felt like I was putting on them a lot, because they, and also as well because I was feeling quite low in moods and, you know I just felt like they were having to be quite supportive and also as well putting on my mum because of my uncle as well like how, I just felt bad for sort of like having this condition.

Rachael describes waking up in an intensive care unit after an episode of status epilepticus. She...

I remember waking up, and sort of like they had me in a neck brace, thankfully I hadn't broke a bone in my body, I was absolutely fine. They had they had me in a neck brace but the doctor came along and checked my neck and sort of like felt down my back. I was a bit sore and achy, but I was absolutely fine. I saw all these x-rays of me, oh look. And [laughs] I remember the nurse sort of like saying, right, you know I was waking up, I was sat up now, and I was like oh you know feeling a bit dizzy and stuff and I had all these lines going in my arms, and she was describing like which ones were which. I remember looking at my arms and I've still got like marks and stuff on my arms from where I had needles inserted, I had like five on one arm, three on the other. 'What are all these for?' I remember having, like waking up, and having loads of bruises on my arms and what the nurse was saying was that what had happened was they were trying to get lines into me while I was fitting so that's why my arm was bruised quite badly. I had like one that came from there to there, it was really ridiculous. But yeah, you can understand that. I remember waking up and I was like oh, she says, 'Oh, I need to take this out,' and she lifted up this catheter bag, and I was like, 'Oh no. I've got a wee bag,' [laughs]. It was just like, 'Oh God.' It was just all a bit of a strange experience.

I remember the worst thing was, is that when I was out that night, I sort of like you know, I'd dressed myself up 'cos I'd been feeling a bit rotten so I had on like my best clothes, and I had on this jacket that I absolutely adored. It was like a beautiful red leather, dead expensive jacket, and it was really cool, people used to ask me where it was from. It was like, the nurse was going through my things, like all my things were sort of like packed in a bag, and they'd cut my clothes off me in A&E, and she just picked up this shred of a jacket with all the stuffing hanging out and just like I remember you know the worst thing about waking up in ICU 'cos I was absolutely fine, there was nothing really wrong with me'

Yeah so I remember the worst thing about waking up in ICU was that you know I was fine, and you know I'd not broken any bones thank god or you know anything like that and you know I just felt rubbish. I remember trying to sit up and I was like, 'I'm fine now, I can sit up' and the nurse going, 'Whoa, hang on a second' And I was just went, 'Oh my God.' And she was like, 'See, trying to do too much too soon.' 'cos I was absolutely fine and then you know the nurse was going through my things, and she showed me my jacket and I just burst into tears, I was like, it was the worst thing about it. 'Cos I just really loved these clothes, and I just thought, why did they' And there's another embarrassing thing 'cos my knickers were missing, I thought so where have they gone? [laughs] And they'd cut my bra up and you know it was just like, it was kind of embarrassing 'cos you're thinking, 'Oh, God, you know I was you know zonked out.' Oh my goodness. So you just think oh all these things were done to you while you were asleep.

Rachael had a long struggle to get the diagnosis. First she was told it was nothing, then got an...

I've been to the doctors' and you know they did blood tests and from what I now know from like being in the medical profession, and you know it doesn't really show up anything, so it's a bit pointless doing that, but she says 'Oh I don't think its epilepsy, you know I don't think it's having fits, see how you are and come back in a couple of weeks.' I was just like, 'Oh, okay.' So I went away, within that two weeks I had another fit, same episode.

So I went back to the doctors like she said in two weeks time and, she said, 'Oh your blood tests have come back absolutely fine.' Yeah good, okay, that's a plus point, and I said, 'But I'm still having these, these fits.' And she says, 'Hmm, okay, what we could do is we could refer you to a neurologist.' And I was like, 'Yeah, that'd, you know that'd be good.' Just to check it out. Just to make sure everything is alright. So they put the referral all through, and unfortunately what happened is they put it through as an emergency referral and they said that I should like get an appointment within three weeks. Unfortunately it, the doctor apparently who I saw, the GP that I saw was quite new, she didn't even know how to use the computer which was quite weird like she was trying to type things in and couldn't spell and stuff which I thought was a bit strange.

I went back, manage to get back and it was like no there's not been a referral put through, and you just think, 'Oh no' and I said, 'I've just had this fit again and you know I said you know I'm just, it was really starting to affect me because I was having to have time off work 'cos you take like a day to recover afterwards, and I said I could really do, could really do with seeing someone and getting this sorted. 'Cos it seems to just be getting worse, they're becoming more, they were becoming more frequent and they seemed to becoming more violent as well and also as well they seemed to be seemed to be getting a bit like, I'd have one, and then I'd go straight into another and then straight into another again, and you'd know when you'd sort of had a really bad fit from how rubbish you felt the time afterwards. 

And so, the doctors like apologised loads and they were like, 'Oh we'll put you through.' And they said to me but the best thing is next time you have a fit, call an ambulance, go through A&E because that's the best way to get seen straight away. I was like, right, I'll do that.

Rachael got a lot of support from other young people on an epilepsy message board. She also kept...

When I was first diagnosed, even before I was diagnosed, I like went off, and I like most people do when they find out that they've got something, I'd completely researched it on the internet and there is some really really, there is one website that's got a very good messageboard, and they were very supportive. So it's like getting in touch with different people with epilepsy who were young as well, because going to support groups and sort of like trying to share your experiences and it was nice to sort of like see oh this person's had that problem and this person's had that problem. So I'm not alone. And so that was definitely a definite positive side of it.

You found the webforum, or the message board' supportive?

The message board, yes definitely. As well because you can you know you can pick what posts you want to look at so you can see something, if there's a title of a post and you feel it's relevant to you, you can go and have a look, whereas you can cut out all the rest, like all the rants that people go on about, so it's nice just to pick that little few. And also as well, you can post sort of like; I kept a seizure diary on there. And it was just, it was really weird actually, 'cos I had a look at it the other day, and it was just like, oh my God things have changed so much. But you know you post, you post a bit this has happened, this has happened now, oh this has happened. And they would like lift you up, and sort of say, don't worry, we've gone through it as well, oh you must be feeling rubbish, sending you big hugs and stuff like that. And it was just, it really really really helps. Definitely helps.

Yeah, so is that something that you would recommend to others?

Oh God yes, definitely, definitely, definitely.