Ashlea – Interview 22

Ashlea was diagnosed with tonic clonic epilepsy when she was 18. She is on lamotrigine and has been seizure-free for two years.

Ashlea is a 21-year-old medical student. She had her first seizure at 16 but because it was only an isolated incident, she was told she wouldn’t be classified as having epilepsy. She went on to have tests, but was never given the results so she assumed everything was OK. Then, just before her 19th birthday, she had a major tonic-clonic seizure, was taken to hospital and then diagnosed with tonic-clonic epilepsy and put on medication.

Ashlea and her family had some previous knowledge of epilepsy because her younger sister had childhood absence epilepsy. Ashlea says her seizures were so different from her sister’s that hers is almost like a different condition. Ashlea has had three tonic-clonic seizures altogether and since she started taking lamotrigine, just over two years before the interview, has been seizure-free. She says seizure-control is really important because after each seizure she is ‘practically comatosed’ for up to 72 hours and can’t do anything at all.

Ashlea is now training to be a doctor and has just finished her 2nd year. She got her driving licence back which is really important for her, especially because she has to travel to placements on the course. She did a project on ‘Motherhood and epilepsy’ as part her course and only then found out about the interaction between the contraceptive pill and AEDs, the risk of PCOS in epilepsy and also that epilepsy can affect fertility. Ashlea says doctors should give all this information to everybody with epilepsy.

For two years after the diagnosis, Ashlea didn’t drink any alcohol. This was a big change as she used to drink a lot as ‘part and parcel’ of social life. She drinks now, but much less, and says that drinking less has made her ‘deal with things better’. Ashlea used to be a competitive swimmer and still swims many times a week. She also used to do Judo. Ashlea likes arts and photography and goes to lot of exhibitions. She lives in a shared house with other students.

Ashlea didn’t feel emotional about the diagnosis because she was expecting it. Her seizures didn…

Age at interview 21

Gender Female

Age at diagnosis 18

It wasn’t a surprise because I’d already figured it out that they were gonna say, ‘You’re epileptic. They were gonna start treatment, so it wasn’t a surprise. When I realised myself that, ‘Oh I must be epileptic. It wasn’t really that much of an emotional thing because I kind of already knew really I just hadn’t like put much thought into it. But I already really knew so it wasn’t like it was out of the blue kind of thing. And you know, it wasn’t that much of a you know it wasn’t like. ‘Oh God, it’s sad everything,’ it was more just, ‘Oh it’s a bit inconvenient. Because it doesn’t affect me that much, you know I’m not having seizures every day, I’m not in much danger, and it’s not really that emotional for me. I was upset but not that much, I just got on with it, like that’s pretty much all you can do you can’t do much else. I think my mum was more upset than I was.

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Ashlea wasn’t given much information by her neurologist and she wasn’t happy with the care. She…

Age at interview 21

Gender Female

Age at diagnosis 18

Could’ve been better [her health care], because I wasn’t given information. I had to find it out myself. And while that hasn’t disadvantaged me, it shouldn’t be like that, your doctor should tell you. I know that I could go and ask my doctor, if I wanted to know something, but if you don’t know that there’s something there how do you know to ask. Many people would not you know they wouldn’t have a clue about their epilepsy if they’d had the same like medical care as I had. So, from my point of view it’s not a problem but for other, I thought, I actually thought it was quite poor.

You would’ve wanted more information?

More information, I mean like when I went to see the neurologist after when I was in the hospital. I remember the appointment lasted about ten minutes and ten minutes when you’re telling a 19-year-old-girl that she’s got a chronic condition that is potentially life threatening and is gonna persist for you know for pretty much most of her life, that’s not long enough, at all. I mean I didn’t know what to ask the neurologist. I’d no idea because I was just, ‘I’m epileptic, Oh gosh. So, that it wasn’t, it wasn’t a good standard of care, I don’t think.

Have you seen an epilepsy nurse or just a neurologist?

Neurologist. My GP though, my Gps surgery has been very good because I have a review every now and again and I think when the computer tells them I have to have a review and they ask me loads of questions. They’re very helpful with it actually, they’re much more helpful than the actual neurologist’s clinic. So yeah, that’s quite useful, quite like having those. ‘Cos even though nothing changed, it’s just good to like reflect on it and just think about it, so you know, yeah I quite like that.

Do you find that with the GP they get to know you as well?

Yeah, I knew my GP at home, definitely. I mean when I was first diagnosed we actually deliberately made an appointment to see my family GP because even though normally you don’t get to see her because she’s so busy, you just end up with you know whoever’s in that day. But we actually deliberately made an appointment because, because we know her, she knows me, and she knows what I’m like, she knows what like level of information to give, so we did do that. With my GP here, they don’t know me ‘cos I’ve only been with them here two year, so they don’t really know me. I only really go when I need a prescription and stuff so it’s not like that, seeing someone who knew me definitely helped.

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Ashlea would have preferred to get information about SUDEP from her neurologist and says…

Age at interview 21

Gender Female

Age at diagnosis 18

I would’ve liked to have known a lot more myself because that’s the kind of person I am, I like to know what I’ve got you know, what this means, the implications, the actual risks, you know. Not just well there is a risk of this, I’d like to know what the risk is you know and that’s how I work. I mean I can understand that some people wouldn’t, for instance I’m not a very sort of panicky person generally, so, being told that there is sudden death in epilepsy wouldn’t make me immediately go, ‘Oh my God this is dreadful. and start crying. That would make me process it and think about it and like find out more about it, but I understand that some people, it would panic them. So I think you know just, you know it would be better if the information was given but the neurologist should be able to assess how to give the information rather. But I would definitely prefer to be given the information by the neurologist and by the clinic because I had to find it out for myself and you know, the average person doesn’t have a medical text book.

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When Ashlea goes clubbing and flashing lights come on, she and her friends all cover one eye so…

Age at interview 21

Gender Female

Age at diagnosis 18

When it happens, you know if there’s a scene and something strobes, or moves which looks like it could be a problem then I just do this [cover eye] because I was told that this might stop it, I don’t really know how it works, but I remember this from when I was a kid with my sister had it. But it doesn’t really stop me doing anything because if it, if it just came up then I’d just do that, and you know the problem’s gone. It can be quite inconvenient because we went to a Fun Fair at the Bonfire last year, and it was at night time and they had strobe lights and I had to in obviously, open as, there wasn’t anywhere that wasn’t strobing and I had to cover my eye up for 45 minutes, while my friends went on the rides and stuff and then when we were walking back to the bus stop, like this eye had like basically gone to sleep, and the eyelid was like drooping and I couldn’t get it to come back up again, and it was all a bit funny I looked a bit like I wasn’t quite there, but. Yeah so it can be a bit inconvenient and you can look quite strange but fortunately I’ve got great friends and so when a strobe light comes on in a club they all start dancing like this so it’s, it’s not just me, so they all think, they all just automatically do it, we all do it, and it’s just you know a bit of a laugh. People look at us as weird, but it’s not like they’re looking at me weird they’re looking at all of us weird so it’s alright [laughs].

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Ashlea’s mum knew a young man who died after a seizure.

Age at interview 21

Gender Female

Age at diagnosis 18

My mum’s friend from work she had a son who was epileptic, same epilepsy as me, diagnosed when he was 18, and then when he was 22 he went to the pub with his mates in the afternoon, in the morning, no in the afternoon, must’ve been in the afternoon ‘cos you can’t really go to the pub in the morning well, you can now, but you couldn’t then [chuckle]. Had like two pints or possibly three, I can’t quite remember now, came home, went for a nap and he had a fit and actually like choked on his vomit because that’s often the common cause. You can get that when you’re and he died at 22 and obviously being 21, that’s quite you know it’s quite a scare for me so I always sleep on my front, no matter what so.

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Ashlea takes a while to come around after a tonic-clonic seizure and loses her memory for a while…

Age at interview 21

Gender Female

Age at diagnosis 18

That lasts about five minutes and then afterwards I’m unconscious, like completely unconscious, nothing will rouse me unconscious, which is technically a coma actually. I don’t know how long that lasts at all, and I don’t know much because I do not remember like anything for like hours. When I had the first one I do vaguely remember the ambulance man helping me up the drive, but that is the only memory I’ve got from a period of about six hours. So even when I’m conscious and I’m like, my parents came and stayed at the hospital after I had the big one, they actually gave me my birthday present early, and I didn’t remember getting it, at all. So when I like looked in my bedside cabinet the next day I was like, ‘Oh, what’s this?’ and had no idea that it was mind because they gave it to me and I was happy at the time and everything, but I’ve got no recollection [laughs]. That’s the main thing, I just lose memory and I have the worst headache ever I’ve ever experienced for like, it tends to last between 24 and 48 hours.

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Ashlea needs a lot of medicines – for her asthma, a back problem and epilepsy. She gets all of…

Age at interview 21

Gender Female

Age at diagnosis 18

I do take awful lot of tablets [laughs], for it seems ‘cos I’ve got my epilepsy tablets and I’ve got my hay fever tablets, and I’ve got my inhalers ‘cos I’m asthmatic, and I’ve unfortunately got a back problem, so I’ve got like painkillers for that. But fortunately the one good thing about having epileptic is that you get free, you get a medical exemption certificate. All your prescriptions are free and that is the best thing ever [laughs]. I mean I couldn’t really ask for anything more. That’s just everything that I want really. So yeah, it’s got good sides and bad sides.

Yeah. Well that amount of medication, that’s a big saving in money.

It’s saved me an awful lot of money. So yeah.

Absolutely, it is a benefit.

Yeah, ‘cos I’d hate to have to pay for, especially when you’ve got to buy them every month, it’s not like hay fever you can just, you know it’s only a few months of the year, you know. If you’ve got to buy epilepsy tablets every single month then it becomes a strain for a lowly student such as myself.

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Because of her medication, Ashlea gets spots on her chest. Her doctor also thought her medication…

Age at interview 21

Gender Female

Age at diagnosis 18

I actually get quite bad spots on my chest, and I know that certainly with at least one of the anticonvulsants, a side effect is acne, not on the face. The way, when it started, it started when I started taking the tablets, and although I’ve got treatment for it, and you know it’s gone away because I’ve got treatment for it, if I stop the treatment for that, it would come back because I’m on my antiepileptics. And that is a side effect of one I definitely know, and I’m fairly sure this one as well. Also, the doctors aren’t really sure about this because it’s not like one of the listed ones that happens, but when I started taking them originally my white blood cell count dropped to just above, it was on the borderline between. I was basically almost immunocompromised, and, it went back up again after a few months. But then a few months and it went back down again, it goes up and down and that started when I started taking the tablets. It has been said about some antiepileptic drugs that it could have effects on the white blood cell count. And although it’s not listed direct, the doctors reckon that was what caused it. I got quite ill, I had like, about this time last year I had five chest infections between February and May. I had five separate chest infections because I just I couldn’t fight them off. And, so that that did affect me, that’s actually another effect on my daily life that I’ve forgotten about. I just go and get my blood checked every now and again just to make sure everything’s fine and you’re supposed to do that anyway to get liver function tests because of the way that the drug is metabolised in the body. So they reckon that somehow the blood, the drug had impacts on my bone marrow but I’m fine, I’m perfectly healthy so you know, it doesn’t bother me that much. It happened, but I’m okay at the moment.

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Ashlea makes sure her travel insurance covers epilepsy, takes her EU health card with her and…

Age at interview 21

Gender Female

Age at diagnosis 18

I take my tablets with me, I do always make sure like the first thing I think about is getting my E111 thing that is now a card, but I don’t know what it’s called now, because if something happened you know. Travel insurance just always make sure the medical, just read through the medical bit make sure it’s alright, just in case. ‘Cos even if you just have a fit, and they take you into hospital, then that could cost so much money, that you know, it just does make sense to just make sure, so I just check the cover of that is really good. I’m also not wearing it today but normally I wear a bracelet that’s, it’s from a website I can’t remember what it’s called now. It’s a charity and it’s got sort of the medical symbol on the front, and then on the back it says like I’ve got epilepsy and I’m on medication, also says I’m an organ donor. I normally have that and a card in my purse and that just so if I was in another country and something happened and nobody knew who I was and you know nothing, then at least I’d have that.

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