Bex - Interview 04

Age at interview: 20

Age at diagnosis: 13

Brief Outline: Bex was diagnosed with photosensitive absence epilepsy at 13. At the moment she is changing medication from Epilim (sodium valproate) to Keppra (levetiracetam). She has several absence and myoclonic seizures a day.

Background: Bex is 20 and full-time history student. She is single and lives at university student halls of residence. Ethnic background / nationality' White British / Welsh.

More about me...

Bex is 20 and studies history at university. She started having tonic clonic seizures at the age of ten and was diagnosed with photosensitive epilepsy at 13. Over the years, seizures changed form and she now has myoclonic seizures daily. She is in the middle of changing her medication from Epilim (sodium valproate) to Keppra (levetiracetam). She has had a long and difficult struggle to find medication that works well for her. This has meant a lot of time back and forth to different hospitals and going through different tests - this has been hard for her and her family. 

Bex had bad experiences in school, being bullied because of epilepsy. Because of all these difficulties she made a conscious choice do things differently in life. She joined a local church where people have been more understanding about her epilepsy. Bex also started surfing as part of the church surf club and now goes surfing regularly. She says by taking up surfing she was becoming different, "because of what she did, not because of what she had". She says as long as she is careful to surf on safe beaches and makes sure she's had plenty of sleep and eaten properly, she is absolutely fine.

Bex has photosensitive epilepsy and avoiding trigger factors is important for her. She can still go to cinema and gigs - she calls the box office beforehand to ask which gigs have strobe lights and friends can tell her which films are safe for her to watch. She is careful not to watch TV for too long and uses a laptop screen rather than a PC. Also wearing sunglasses can help. In lectures she follows powerpoint presentations in hard copies. Bex says her future is looking good, she wants to be a teacher, do archaeology and lots more surfing!

Bex's teachers did little about bullying so she decided to change things herself. She joined a...

I started school not knowing I had epilepsy and then pretty soon into the high school I learnt I had it, and I had a seizure in one of my classes and my teacher, wasn't that really aware, didn't know about epilepsy, I don't think he knew I had it and it became an issue and obviously bullying sort of resulted from that. It was quite difficult.

That was very, it was difficult quite lot at the time and I thought, you know I wanted to do something about it and I couldn't really. And the school weren't really responding, because I was at the time friends with this bully and they just thought it was like a cat fight type of thing and a lot of the time they didn't really respond so it was very difficult.

I just wanted to do something about my life so I joined, I joined a local church that I knew about and they had a good youth club and I got talking to one of the guys there and he surfed and I always liked surfers so I thought hmm, I might give it go. So he invited me along to one of the surf group things that they had, and I joined that and just really got into surfing and really enjoyed just doing things for myself and just you know doing something I enjoyed and I suddenly realised that I was becoming different because of what I did, not because of what I had.

Bex's local epilepsy support group had organised a nurse who would go to schools or youth clubs...

My local epilepsy group were quite supportive. They always offer a service and your nurse will come and teach your teachers or if you have got a youth club, you can have leaders there and learn about epilepsy and things. So the teachers were quite open to learn about things like that and I think they did their own course, you know, because we were going to bring in the people, but they went on a course. And they often had, there was another boy in my year that had epilepsy and he had it quite bad as well, so they sort of knew about us both and they would have meetings about us, which was kind of weird actually but it was nice to know that they wanted to do something and were prepared to help. There was that one teacher in particular that really wanted, you know he did go out the way to help, especially after having the seizure he realised that he didn't know a lot and it was important to know a lot about it, because it is so common you know. I think that is something that has improved you know. More a lot more people know about epilepsy now then they did, you know, quite a few years ago now so'

It was hard for Bex to start taking her medicine because she had always been healthy. She now...

How do you feel about taking all those tablets?

I found it difficult at first. I went from being a very healthy person to suddenly having to take you know medication twice a day and it was very difficult. I was on six tablets daily to start with and then on the Epilim (sodium valproate) again I was on six tablets a day. So it was it was very, very difficult. And now I have gone up I am taking about eleven tablets a day. It is a lot and you think, you sometimes wonder what you are pumping into your body type thing you know. I don't forget to take them, but sometimes you don't really want to, sometimes, just think it is a lot of stuff, you know and you do wonder what it does to your body sometimes. Even though it helps, sometimes you are not always happy about it. It's a sort of a love hate relationship with your medication.

Bex describes the side effects of three different tablets she has been on, including tiredness,...

Well the first tablets I was on was lamotrigine, which is Lamictal and I found those, they worked, but they gave me headaches. They cut out what I had, I didn't know then, but I had myoclonic seizures. And I did know but you know that was they weren't really present or I felt they weren't present. So it worked in that sense, but lots of headaches and I couldn't stay on those. So they put me on Epilim (sodium valproate) and they were better for side-effects but they didn't work, so they increased my dosage for that, I think twice or three times and I stayed on Epilim longer. Because it is a good drug for photosensitive epilepsy. So it was it was a big decision then to change over again, but you know I was offered Keppra (levetiracepam). So I was put onto Keppra quite recently and at the moment I am on Epilim and Keppra because I am mid changeover. So it's quite difficult, the side-effects were awful. I am hoping, I am not sure how Keppra works yet. But I am sure it'll get better but they will withdraw Epilim quite soon so I'll be on Keppra then.

So what were the side effects like? You said they were awful?

For Keppra I was like sick, quite dizzy, but I was sleeping, you know I couldn't get up in the mornings which was awkward with Uni. All my lectures were in the morning and I was missing a lot of time. You often get drowsiness with medication so I knew that it wasn't a problem, but then my body didn't seem to like the drugs so I was taken into hospital. And I just was sick, I was dizzy. It was like getting the flu but you know I was always tired, I was sleeping a lot, and I was just always tired. And it was very, very difficult. I didn't really know what I could do to improve it.

Bex feels safer because she wears a medical alert chain.

When I was younger, obviously when you know, the leaflets came out, everything suddenly changed, so I had someone sit with me when I was in the bath type thing and you know lots of things changed to aid safety. Now I am older, yes, it is things like that. I do tend, I take a shower. I always have someone, like you would have next of kin, I always have someone that is sort of got their phone on at all times and I can call them. I have got a medic alert chain thing as well, you know, so that that helps, just in case. You know if there is a seizure someone, not so much for my benefit but people feel safe that there's something there, someone there they can call and get the help. Obviously I don't know what is going on so I don't really mind, but this helps other people rather than myself.

How does that work?

Medic alert is a is a charity basically, they provide you buy a piece of jewellery or something with the medic alert emblem on, you know different charities have similar things with a card and basically there is number on it and then you call up if the person is having a seizure and they will inform next of kin and they tell you what to do as well. I think it is good you know. It is good for families and my friends to feel safe. They feel comfortable that they can help me, because it is naturally what they want to do.

And you carry that with you all the time?

Yeah. I carry that. I tried to carry some form of, well that is my form of ID but you know I try to carry something else as well, just in case you forget to wear your medic alert or that's always safer.

Bex is on two AEDs which could cause birth defects in babies. She says it's important, but also...

It is quite an issue with the medication because the two drugs I am on can cause things like spina bifida and cleft lip. So yeah, that can be quite an issue. It is always very difficult taking medication for that reason and certain drugs you know, sometimes you are told they can cause infertility and things, but I think it is important not to worry too much about things. But you know you do have to be wise and watch what contraception you're on and sometimes the pill doesn't always work with the medication so you have to check that out and sometimes it can be a struggle sometimes because you always gotta look into things and sometimes you really wish that you didn't need to. But that is something you have to do. But the drugs that I am on at the moment are very very dangerous, but if yeah if I was to have a child then they would take me off, take me off them so yeah.

Bex makes sure she eats and sleeps well before going surfing and only surfs on safe beaches with...

They tell you like you can't swim you know if you have epilepsy and you know you can't mix and wander around that type of thing. And that always used to really affect me. I used to think oh, you know, I want to do that but I used to just take people with me. And there are ways around it. You can inform the lifeguard that you have it if you feel comfortable enough. If not, take a friend, if you really want to swim on your own, then inform the lifeguard. But with surfing there often isn't a lifeguard and I surf in winters. So yeah, that was a big problem. But it is just surf, I surf with friends. Very careful of the beaches I surf at. Make sure, again that the just usual surfer rules just watch the beaches and things that you that you surf, make you sure you know them. But I also like to make sure that I eat well and sleep well the night before. And you know that the people I am surfing with obviously know about the epilepsy and know what to do. But yeah, I am pretty safe so. Nothing, nothing has happened in the sea. So that is good. There's always seem to be more limitations than what there are when you look into it.

Bex points out that epilepsy is different in every person who has it.

Do you think that is important for people to realise that epilepsy is so different in every individual case?

Yeah. I think so. And I think a lot of medical advice I think should realise that. I think sometimes you know it could be overlooked, but it's different in each person. I think sometimes you can be put in a category if you've got that type of epilepsy then these are the trigger factors or whatever. But it's different in each person and each person's lifestyle is different isn't it.

Bex worried that having a seizure during the EEG would upset her parents. She was also concerned...

Well after my third seizure I was given an EEG at a local hospital and I was quite scared. I was unsure about what it would' I knew it wouldn't hurt or anything but I don't know why I was just very very apprehensive about having it done. I went along and had it done. And my parents were there, I remember that time. I felt uncomfortable in a way that they were there. I don't know why, but it was very strange. I don't know if I thought, I might have a seizure, because you know they are shining a light in my eyes I thought you know, I could go. I thought I didn't want to see my parents upset again or something. I had one of those. I didn't have any other tests until about two years ago now when I was given another EEG and this time I took a friend and I really didn't want to go that time, I don't know why again. But again it didn't hurt or anything so yeah'

Why do you think it was a bit uncomfortable or you were apprehensive?

I am not sure. I think in a sense it is not so much the tests, I think sometimes the results. My second test showed, I had a letter back saying everything was normal. And I was like is that are normal for epileptic or normal so' you know what does that mean and sometimes the information you know could be given to you in a different way than what you need. You need a lot of information and the results, I mean it takes months, the results to come back and you know you are just sitting around waiting. And it is just the whole process, it's another test. You know another waiting list and are you really wasting your time and you know sometimes you just think what is the point you know. Sometimes you don't think you are getting anywhere.

Being diagnosed with epilepsy at 13 was very hard for Bex because she felt it made her different...

I was diagnosed with photosensitive epilepsy and was put on a medication, I can't think what it was called. But I was put on medication and then was told obviously that it would take about six months but for it to work. But I was given loads of leaflets type thing and given a long list of different organisations that could help, different nurses and things. To be honest I didn't find it that helpful because at the time I was, you know I was very young, and I was just going into my teens [laugh], you know hitting puberty and really just wanted to be a normal teenager type thing. And they wanted me to make decisions I didn't really want to make you know, which medication I was going to go on, which was not the sort of thing I really wanted to be thinking about. I found it very difficult, you know, thirteen to be trying to live a different life to my friends, a lot of friends didn't react well to it. They supported me, but they were 'it was like they went through a grieving process in a way because they weren't quite sure what to do, and they didn't really know anything about epilepsy, so I think it has changed in ten years, but you know, I lost a lot of friends through that. So that was very hard.

Bex's photosensitive epilepsy is triggered by different lighting conditions, strobe lights and...

What would those trigger factors be for you?

For me, mainly because it is photosensitive, it is anything to do with light really, which can be you know a big problem. Artificial lighting or so, anything outdoors is okay, but if I don't eat well, or don't sleep too well, then that can be that can be a problem or get too stressed. Sometimes I find, because I have my myoclonic seizures I sort of space out a lot in the day which obviously would stop my driving, because I have been seizure free with the grand mal seizures for many years. So it is only really that keeping me from doing anything, but you know I don't have as many, I suppose I don't notice the trigger factors now, because I sort of look after my lifestyle and if you if you look after your lifestyle and then look at your trigger factors then you do lead a pretty normal life.

Sometimes I'll call the people up at the cinema. Or I will ask people if they have seen it. A lot of people know now what sort of lights will trigger me off. So I do have to be very careful who I ask, you know, but a lot of people be like oh you'll be fine, but some people are very careful and they'll say oh don't go to that one. But they will, you know, recommend a certain film. And you know it's again being wise on who you trust. Sometimes although your friend is a friend, you do have to be wise on who you who you do trust and who you tell. You know, you might tell all your friends about the epilepsy and they might all accept but only one or two might be able to deal with it. It is just the way people are. So it is only ever one or two people that I ever go to for things like that I just sort of say, you know, which film shall I pick and you know and they they're quite wise to know what triggers me off type thing.

Computer is if I turn the brightness down that helps a bit, and sometimes I wear my sunglasses which make me look weird in winter [laughs], but sometimes I am okay for a while. And other times I really can't use it at all. But I am okay for a limited amount of time, a few hours. It's hard at university sometimes, when everything is on line or on Power Point so it means you know I either use one or other type thing, but it is not so bad. It's awkward, but you know it is better if I have a laptop than you know a computer screen.

Bex has myoclonic seizures early in the morning and usually her arm jerks.

And what about those myoclonic jerks? How do they manifest in you?

I get them early in the morning. If I have just woken up or if I have been woken up (unclear word) or if I am tired sometimes I just jerk. And it will be like a single jerk but sometimes I get a bit shaky as well. That's about it.

Is it an arm or leg or'?

Usually my arms. Usually one arm or something. Like if I've been with people and I have spilt stuff you know on them because I have been so close and I have just jerked you know.

Bex describes the safety pillow she has.

I have got like almost a safety pillow just in case I am ill then I will have the pillow instead of you know a normal one. Just reducing the risks really again, just watching your trigger factors and travelling if I am ill. You know if I am going through a drug changeovers, I will make sure someone travels with me and things, so that helps. Just again it makes you feel better about yourself, you know just safety.

And what is the pillow, how does it work?

It is just a memory foam pillow but because it has sort of got a hollow centre, so instead of being all pillow, you can breathe, it gives you that extra space to breath and it just makes it better, you know, if you roll over it's less dangerous.

Bex says it's confusing to see different doctors and nurses at every appointment, especially when...

Do you usually see the same consultant and the same nurse?

It is not always the same nurse which can be quite confusing sometimes. But if you know the name of your nurse that is always handy, because you can always ask for them. A change in doctors, nurses I would advice not to do really. I have found it very difficult sometimes, one nurse will say one thing and another nurse will say another. They won't all agree, and they won't all know what the other one has, why the other one has suggested something. Quite recently I went to a doctor and they'd described the type of epilepsy I had and I didn't have a clue what he was on about. I suppose it was another term he'd used for my type of seizures, but I had never heard it before and it can be quite difficult sometimes. 

Sometimes you have got to speak out, that's a big thing as well. If you just sit sometimes and listen I think you are sort of used to going to the doctors if you have got a flu or the cold but if you have got epilepsy you need to speak out and sometimes say, 'Well I am feeling this.' And you need to ask the questions, you can't just expect the doctor to know what is going on, you need to talk, because it is quite an individual thing and it does change. It changes from one person to another and then over time as well. When I go next time things might change again and it is important to you know to illustrate that, so that they can keep up with it.

Absolutely. Do you find it easy to explain to them and ask them questions, is it easy for you?

It is now. It wasn't easy then. When I was younger, it was very difficult. I would just take whatever medication they gave me [laughs]. If they gave it and I would take it, but now I will ask, and if they give me a blood test, I will ask you know why you know, at this particular time. Sometimes they are quite routine but not always, and certain tests sometimes you'll ask. You do tend to ask more questions as of now. I don't know if it is because I am older or feel more confident but it is good to ask the questions. Sometimes you might just get a simple answer but sometimes it can really help you understand a bit more.

Bex's parents and grandparents have been very upset about her epilepsy. Her parents haven't put ...

Could you tell me a bit more about the effect it had on your family over the years?

I think it had it had you know an effect on my grandparents. And obviously my mother and father and my sister got quite upset, you know, she'd get upset every time I had a seizure but my family sort of cope now with humour and we just laugh about it. And, you know, I know when I was diagnosed it was kind of weird. You know my friends found it very strange, you know my family could cope with, you know how they could be humorous about it, but it is really the only way we can cope because you know you've got to live your life and it is something that is quite nasty sometimes, but it's it is something you have to come terms with at the end of the day and they you know they get on with it good now and they understand I am living that a life you know again more. It is not about the epilepsy anymore, it is about my life and epilepsy is only a small part of it. So they are quite happy to see me go off and travel and things. So, they do worry sometimes you know, because may be, me I want to go off on my own [laughs] and they are uhh, but they do let me. They don't tend to have a rein on me which is I really respect it because they really a lot of parents naturally would want to protect their child and it was very difficult but from about the age of 15 onwards they sort of let go of the reins and said you know it's a strong bond I have between my parents because of that and yes a lot of respect there. You know they, it was it was hard for them to let go and I was obviously I was really quiet. I was a quiet child as well so to see me going off doing things now I think they are quite happy that I that they made that choice, because there was a lot of people they'd spoken to and people with epilepsy that, you know, they didn't do a lot and I had chosen to do other things, so that's good.

Bex was angry that her doctor hadn't told her about SUDEP and her mum found out about it...

I suppose for my mother, one time she was reading a leaflet and at the beginning of the leaflet there was a note and it was to the people who had lost people through epilepsy and my mother didn't realise just you know the effect epilepsy can have. So she, you know that broke her again, you know, she was quite upset.

It's something that did concern me in a in a sense that we weren't told about SUDEP and in a way I was angry. I wasn't scared or anything you know. The risks were very, I was told, quite low, and in a sense I was told the risk of photosensitive epilepsy was low. So I was aware that there was a chance and I thought well if I've got photosensitive epilepsy there is always a chance of SUDEP but there's always chances of other things happening in life, you know, so it didn't really matter so much to me. But I was angry that my mother found out and I was never told. You know that was quite hard, you know to see my family go through that and sometimes my cousins might say something and make me realise just how much they think about it and I never think about it at all really, but I know my cousins were very. A lot of people I think they know about it a lot and it is always on their mind type of thing.

Why were you angry?

I was angry because you know I wasn't told. It was something we picked up in a leaflet and I think I think people should be informed. I think it does scare people maybe. I'm not sure when is a good time to be told, but it's something, I think now, people are told about it more now, but they weren't, they weren't when I was 13 and it was something I think a lot of research has gone into now. But yeah, I think people should be told, and they shouldn't have to find out and it is important to know the risks so that you can prevent them you know.