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Epilepsy in Young People

Helen - Interview 07

Age at interview: 23
Age at diagnosis: 22
Brief Outline: Helen has had simple and complex partial seizures for most of her life but was diagnosed only 14 months before the interview. She is on lamotrigine and her seizures are reasonably well controlled.
Background: Helen is 23 and works fulltime as a broadcast assistant. She is single and lives on her own. Ethnic background / nationality' White British.

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Helen is 23 and works as a full-time broadcast assistant. She has had simple and complex partial seizures for most of her life but only got the diagnosis 14 months before the interview. Her first memories of seizures are from when she was a teenager but Helen said she didn't tell anybody about her seizures for years as she had no idea what was happening and she was afraid people thinking she was 'going a bit crazy'.

The diagnosis was a relief in the end and Helen says she feels much happier about herself now that she knows what was wrong all these years. However, Helen says it is difficult to accept being classified as disabled and dealing with people's misconceptions and lack of knowledge of epilepsy. She says she still has a lot of questions about her epilepsy and that it still will take a long time for her to come to terms with having it. At the moment Helen is on lamotrigine and her seizures are reasonably well controlled.

Helen has also suffered from depression and raises the issue of being on both anti-depressive medication and AED at the same time. She said that having experienced seizures for a long time, and not knowing what they were, made her a very quiet and introverted child, and 'write bad poetry'. Since, she has found the National Society for Epilepsy webforum extremely supportive and full of 'amazing people' answering her questions and never judging her.

She says it is tricky to know how to deal with mentioning epilepsy in job applications. In job interviews, she always emphasises how she has learnt to plan things carefully and become very organised and in this way turn her epilepsy into a positive thing!

 

Memory problems have affected Helen's exam results and job. She has managed to turn her poor...

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Memory problems have affected Helen's exam results and job. She has managed to turn her poor...

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Another thing I have is that when I do apply for jobs, because I work in a news environment I have problems with remembering who the Shadow Chancellor is that kind of thing' 

So if I have to take some kind of test or something as part of my application that usually means that the company is big enough to have a human resources department and I will ring them up and I'll say, 'Look, I can't do this test because my memory is so bad. Is there any way round it, is there anything else I can do.'' And I'll just tell them about it [having epilepsy] and then I'll make it into a positive and I think that's very important. My positive that I usually use is I'll say, 'Okay, I have temporal lobe epilepsy, and it affects my memory or what I do in a day to day capacity, but this has made me much more organised because I have to write everything down and I have to plan my day really well.' I have A4 notepad which I write down everything I have to do and cross it off as I do it which really helps. So I explain to them that I have dealt with my epilepsy by becoming more organised and I turned it into a really big positive. I'm kind of saying without the epilepsy, I would probably be quite a messy person, but as it is, it's actually made me stronger and helped me to deal with how I deal with day to day life. And they like that.

I think that in that way epilepsy has really helped me, because I mean I am just so much more organised. I know that my memory is bad, but I keep a Filofax. Now when I was kid I always thought that a Filofax was the most pathetic thing for anyone to have. You think grey business men, you know with kind of day planner in black fake leather. But actually I found a really good diary with like hot pink leather case, and it's awesome, it's really good and I don't mind carrying that around at all. I have to keep a big bag full of stuff with a notepad and things in, but just having that has really helped and it has really made a difference, write everything down and it has made me a lot more organised.

 

For years, Helen didn't know her experiences were seizures and she felt like a 'freak'. This made...

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Because I considered myself to be a freak. When people told me at school that, I mean they didn't know I was having these seizures, but when they told me I was a freak I believed them and so keeping it all inside was really difficult. It made me very depressed. It made me very troubled. It made me write very bad poetry. It was very difficult to contain. And how did I manage to keep it together. I mean I just did and because I was so used to being insular and not talking to people. My dad especially was very worried about me at one point that I wasn't ever going to talk, that I was just going to sit in a darkened room and read books for my whole life and that's how I was.

 

Because of her memory problems, Helen has become very organised. She explains how she can turn...

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So far what has really worked for me is if it's a big organisation and they have human resources department then I will be upfront with them because they won't tell the people that are interviewing me what my problem is. So if I have to take some kind of test or something as part of my application that usually means that the company is big enough to have a human resources department and I will ring them up and I'll say, 'Look, I can't do this test because my memory is so bad. Is there any way round it, is there anything else I can do.' If it's not, or if there isn't anything like that then what I will do is in the interview, if it seems right, if it comes up, then I will say, 'I've got temporal lobe epilepsy,' and I'll speak very quickly and say, 'But I don't have convulsive seizures'. Or I'll just explain it fully and not going into too much but just think of how I'm going to say it before. And I'll just tell them about it and then I'll make it into a positive and I think that's very important. My positive that I usually use is I'll say, 'Okay, I have temporal lobe epilepsy, and it affects my memory or what I do in a day to day capacity, but this has made me much more organised because I have to write everything down and I have to plan my day really well.' I actually have A4 notepad which I write down everything I have to do and cross it off as I do it which really helps. So I explain to them that I have dealt with my epilepsy by becoming more organised and I turned it into a really big positive. I'm kind of saying without the epilepsy, I would probably be quite a messy person, but as it is, it's actually made me stronger and helped me to deal with how I deal with day to day life. And they like that. They tend to like that. It works to be upfront with people because otherwise they are going to find out anyway and when they do they are going to be annoyed that you didn't tell them.

 

Helen says it's hard to know when to tell people about her epilepsy. She's 'afraid' of getting...

Helen says it's hard to know when to tell people about her epilepsy. She's 'afraid' of getting...

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At the minute I feel like I'd rather go out with someone that I know very well, or that I know, at least know quite well because then the epilepsy for a start won't be more of a problem, they know more about me. I'd feel horrid about going out with someone, like on a first date, if I didn't know them very well. When do you bring it up? When do you tell them? What point do you tell someone that I have epilepsy? And by doing so, by actually sitting down and telling them are you make too much of a big deal about it? And I think in that way it's made me very afraid. It's made me very afraid of getting involved in a relationship because you bring up a whole great heapful of things that you don't necessarily want to tell someone that you're not very involved with yet. And yes, it has made me kind of afraid, but what can you do? It's just the way life is.

So getting the balance right, when to tell and if you do tell, is it gonna scare them when you don't yourself know them maybe?

I think it's changed the way that I think about relationships with people and I think the reason that I'd rather be friends with someone now before going out with them, is that I've kind of tested them, because you know at a certain point in my friendship with people it does come out. It just comes out, why don't I drive? Why don't I drink? I tell them and if I've known for a while then they have kind of passed the test, so I then I don't mind going out with them. I've got much less to lose. So it has changed the way that I get involved in relationships a great deal and probably for the better. I think. You know it means that I'm lot more picky. But it is good.

 

Helen did really well in her university studies but couldn't pass the exams because of her memory...

Helen did really well in her university studies but couldn't pass the exams because of her memory...

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When I had exams at university I didn't pass them. I can't pass exams unless they are essay questions because I just don't have, I can't remember the facts. I had a lot of exams. I can't remember kind of dates and legislation and things like that. I get the gist of it and I kind of think well have I missed out on something here, should I have been telling people about this. Is this something that I should be declaring? It's strange. I got very good GCSE results in the subject it didn't require me to pass examinations. I did very badly in my A levels, well much more badly then I was expected to because a lot of the A-levels contained exams. I mean I did very badly in general studies which everyone passes [laughs]. And it was because it was just an exam and then when it came to my degree, it was mostly course work. So I did very well apart from the exams and then in my Masters I actually failed all the exams apart from one and that was because they were factual exams and I wonder whether or not I should have told someone and that I could have had some way round it. I mean I did at the end.

 

Helen describes a complex partial seizure she had at the fruit counter of the supermarket.

Helen describes a complex partial seizure she had at the fruit counter of the supermarket.

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A complex partial is a bit more difficult to describe because a complex partial seizure you don't really remember it much at all. I think the most interesting one I've had of those was when I was about to go into a supermarket I had one and I don't entirely know what happened, but the next thing I know I'm walking home with bags full of shopping and I had three melons, seven lemons, a whole load of Mexican food and oh yes, black hair dye [laughing]. I don't know why I just did and I think I must have been quite confused, but I have a vague memory and I'm not sure if it really happened, but I think I stood by the fruit kind of area and looked at a lady, and said Helen - melon until she gave me melons and then I did the same by the lemon counter, I went Helen - lemon. And maybe people hand me lemons and I don't know why I did it, but that's what it's like, you know you get a bit confused and you don't know what's happening.

 

For Helen having an EEG was 'not a bad experience'.

For Helen having an EEG was 'not a bad experience'.

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The EEG was, I thought it was gonna be really scary it wasn't too bad. In fact that was better than the MRI. The EEG, they stuck little kind of things all over my head, I think they are quite like ear phones. They had the kind of little pads and they stuck them all over my head with this kind of glue. It wasn't proper glue, it was kind of gummy stuff. I had to lie there and I had to be as relaxed as I possibly could. When I found out that it wasn't that scary and it wasn't terrifying or intimidating at all, actually I could get quite relaxed because I'd read a lot about it before that was quite useful. They sent me a lot of information at the hospital so that was useful and I just had to lie there and do certain patterns of breathing. They actually were quite upfront, they wanted me to have a seizure. They were trying to bring on conditions that would help me to have a seizure, because if you do have a seizure during the EEG it means that they get your brainwaves and what your brainwaves are doing while you're having one. So they can see what's going on in your head and what your brain is doing, which is quite good. It's more about how your brain is working than what your brain looks like because that's what the MRI is and then they flashed lights in my eyes to see if I was photosensitive but I'm not, I'm quite lucky. I think about three to five per cent of people with epilepsy are photosensitive and I'm not. I'm quite lucky. So that's how that went and then afterwards they, the lady she kind of used some water just to get the pads off my head to dissolve the glue. Although my hair was still a little gluey afterwards. Luckily I'd remembered to take a hat with me which was very good because my top tip for EEG's take a hat. So I made it home and it all washed out perfectly well. And it was actually not a bad experience and it was explained so thoroughly to me, that it was almost a good experience. Though they didn't find anything, but there you go.

 

For Helen having an MRI was 'quite a scary' experience but she jokes that at least now she has...

For Helen having an MRI was 'quite a scary' experience but she jokes that at least now she has...

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I felt special for having an MRI because you know you only really have them in extraordinary circumstances and I was actually really interested to have pictures of the inside of my brain. I mean everyone knows that you have a brain, but I actually have physical proof that I have one. There are pictures. No one can say, 'Oh Helen you're brainless.' Because I can show you, look, look hang on. There it is, that's my brain [laughs]. So I was really pleased to have it done. In preparation for it they basically, I had to take out all the metal in my face which is no mean feat because I have quite a few piercings and bits and pieces. So I had to take all my piercings out because it's like a magnetic resonance imagery isn't it. 

I don't how I remembered that, but I did. So if you have any metal in there at all it gets completely dragged in, so it's very important to take off all the metal that you have on your body. And then I lay there and actually I'm not gonna lie the MRI was quite, it was quite scary. Mainly because you're kind of trapped in a small space like a little doughnut hole and I'm quite a big lady as well, so I was little bit scared about being stuffed into this little doughnut whole. Then you get all these weird noises as the machinery kind of whirs around your head and you hear grinding noises and it's quite, quite loud. And they are quite nice with you, the thing is your head is clamped in and you're supposed to try not to move it. The moment they say that you are moving your head, you are shaking your head, because you know that you're supposed to be moving it. And they play you radio through headphones that you get. The thing is that you can take a CD and that's my top tip for MRI scans is take a CD of music that you want to listen to and music that will calm you down, because I forgot and I had to listen to commercial radio and it was awful [laughs]. It was really bad. And I couldn't hear the words of the presenters because it was so loud and I had to listen to really, really dreadful pop music. Which I do not like. So my top tip for MRI scans is definitely take a mixed CD or mixed tape of all your favourite music.
 
 

People don't know about the 'full range of epilepsy' says Helen. She found hardly any information...

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People don't know about the 'full range of epilepsy' says Helen. She found hardly any information...

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Definitely the fact that people don't know about the full range for epilepsy. It's not something that I was ever taught in the school. It's not something I ever knew about. That's why I wasn't diagnosed until last year, because I didn't know that this form of epilepsy existed. I never met anyone with it, although I know that there are a lot of people out there with my form of epilepsy. It's something that people just don't know about. It's something that, when I search on the internet, I didn't you know when I searched on the internet and tried to find out more about it I could barely find anything.

 

Helen compares the experience of simple partial seizure to being on a roller coaster and she gets...

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Helen compares the experience of simple partial seizure to being on a roller coaster and she gets...

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I've simple and complex partial seizures of the temporal lobe. The kind of seizures that I have, they are very hard to describe. I always describe it as being on a kind of roller coaster. And you're kind of strapped in and you can feel the tension as you know it's gonna happen, you know that it's gonna be scary. And then you know when you're going up the roller coaster and you get that feeling in your stomach and that's actually gastric uprising which is part of the seizure. And in addition to that I kind of get a very very strong feeling of d'j' vu like I know that maybe I'll see something and I'll know that I've seen it before. But I won't necessarily have seen it before because that's just actually just connections in my brain not working perfectly well. So I get to that point where I feel like I'm at the top of the roller coaster and I'm just about to go down and I can see everything below me as though I'm not really there, as though I'm just a third person as I'm floating above my own head. And then all of sudden I'll go whish, I'll be down, round and round and round and it's really terrifying and then they'll stop and I just feel really just weak and trembly and that's what a simple partial seizure is like.

Well I used to have seizures anything between, I always had at least one a day but I used to have anything up to six to eight which you know a lot of people have more. Now I'm on the medication I just don't have them and if I do, it's a bit strange, sometimes I'll be aware that without the medication I would be having a seizure so I'll get a hint of d'j' vu. It's strange because obviously the seizures that you have, okay they are either brought on my stress, but any one event shouldn't bring on seizures. With me, if I walk down the same piece of road every day and I happen to have a seizure on that on that stretch of road, then when I go back there I have a d'j' vu of going there before and then I'll have another seizure. Well, there is a certain stretch of road in [town name] where I used to live, where if I go down that stretch of road I'll get d'j' vu and even if I'm on medication which I'm because I'm walking down there I would still get a twinge of d'j' vu, so on the meds, because even d'j' vus count as seizures.

 

Helen's meditation sessions in school reduced stress and this helped her cope with her depression...

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Helen's meditation sessions in school reduced stress and this helped her cope with her depression...

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She [school librarian] used to be really great. She was our support system and she used to run little meditation sessions, so it was like a tiny, tiny little room, off the side of the library and I used to find that used to really help. It helped with my depression and I tend to find that things that help with my depression help with my epilepsy. Almost like my depression makes me stressed or it just gives me maybe just an altered consciousness which brings on epilepsy, anything outside normal and that helped me quite a bit. But apart from that, alternative therapies well I haven't really associated much with other people with epilepsy.

 

Helen explains why she does badly in exams. Things got much easier once she got the diagnosis and...

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Helen explains why she does badly in exams. Things got much easier once she got the diagnosis and...

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There are two reasons why it's difficult in the exams and the first reason is, my memory is shocking and it's difficult to say what I can remember. But I can't remember people's birthdays. It's really bad. I can't remember when I'm supposed to go out with friends [laughs]. In fact a couple of days ago I was supposed to be going to a cheese and wine evening and someone offered me tickets for a play that I really wanted to see and I'd agreed to go and forgotten I had a cheese and wine evening, even though the person that gave me the tickets gave them to me because she had to go to the same cheese and wine evening [laughs].

But in the exams yes, the memory affects me. But then also there is the fact that under stress I have more seizures. I mean usually day to day my medication completely covers me and I'm fine, but if I'm really, really stressed out like for example I'm just before an exam or you know if something, if I've got something really, really important and I'm really stressed out, then I'm much more likely to have a seizure or at least a very strong deja vu which is pre-seizure. So before I was medicated I used to have seizures in the exams all the time. It was pretty much guaranteed, it would be half way through the exam I'd be freaking out and I would have a seizure. And of course I didn't tell anyone because I thought I was crazy and what do you tell them. Because it's so much easier now that I can say you know, I have epilepsy, because I know what it is. But before you know what it is you can't describe it.

 

Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...

Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...

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Well the thing is I'm not entirely sure when it started because I never went to a doctor and after my seizures I can't really remember them. In fact I can't even remember what I had for breakfast. I think I had yoghurt. But I'm not sure, so remembering far back into my history and I think it's also something that I've kind of blocked out so the problem is I don't know when it started. But my first kind of memories are of having seizures in my early teens and I really, even though it's something that was always there I think, it was something that I started to realise was wrong. I realised that other people didn't have these and that it was something completely different and unique to me. And it was, it is very scary to have something like this and not know what it is. I mean I thought that perhaps I was a witch or you know, I was romanticising a little bit but maybe I was a witch and I had special powers that no one else had and that I just had to find out what they were [laughs]. I kind of thought that I was really special and wow look at me. But these things are actually really horrid. I mean they're great the first part, they are really scary, but they are kind of a bit, wow I'm seeing into a fourth dimension. And then, like almost like you're sticking your head through the fabric of reality and looking around and it's not particularly nice but you're seeing something really different. But it's not very nice afterwards. And it was really difficult to come to terms with at any point. But when you're younger and it made me a very melancholy child. It made me very quiet. I read a lot. I didn't have many friends. I was bullied because I didn't have many friends and I was shy. I didn't like to talk to people, complete opposite of how I'm now. And I just, I think it made me stronger as a person when I was younger, but it made me very reserved, very quiet. 

Problem is that they're, as I said, very hard to describe and my mum, whenever I told my mum about them, she was worried, she thought that maybe I was a bit crazy because people don't really see that side of epilepsy. When they think epilepsy they think of you kind of, you know they think of the stereotypical epileptic fit, the convulsive fit. Someone falling to the ground, the old spoon in the mouth thing [laugh], which is not actually a good idea and you know people blacking out. They don't think that you might be able to be awake and when they see you having a complex partial seizure they just think you've kind of gone a bit dopey in the head, that you're just being stupid or that you're just not paying attention and so they don't understand what you're going through. So when I described these things to my mum and my family they just thought maybe I was going a bit crazy and they told me not to tell anyone. Because I had depression as well they were worried that that was to do with that and maybe I was just going a bit loopy in the head. So I never told anyone.

 

Helen says people have many misconceptions about epilepsy and don't know about it in the way they...

Helen says people have many misconceptions about epilepsy and don't know about it in the way they...

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Epilepsy is a difficult label because there is so much stigma attached to it. There's so much and when you tell people that you've epilepsy they act in a completely different way. They almost expect as though the minute you've said it that you're all of sudden going to fall down and start shaking and foaming at the mouth and things that don't really happen. And in terms of that it's a difficult label to deal with. There is so much ignorance about it. I mean if you say that you've diabetes I mean people know that you can't deal with sugars and if you say you have hay fever, you know you have asthma they know that you have breathing difficulties. If you say you have epilepsy they don't know what that means. They don't understand it. There's no understanding behind what that means or what's gonna happen to you and so it's such a difficult label to deal with.

 

Helen is wary of antidepressants; she had bad experiences on them and says there are better ways...

Helen is wary of antidepressants; she had bad experiences on them and says there are better ways...

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Where you ever on antidepressants before you got diagnosed with epilepsy?

Oh yes. I've been on antidepressants three times [laughs]. I've only ever taken them for a week because all of those times one of my friends found out or saw them. Because I didn't see any need to tell people about it. In fact I saw depression as something to be extremely ashamed of, most people do. And when my friends found them or when I told someone, you know just mentioned it, they made me throw them away because it was Prozac and you know there is a lot about Prozac. One of my relatives got very much addicted to it and it ruined years of her life, she had to go into rehab and things and it's a very strong drug. I took it once for a week and the whole week that I took it I was fine and then I came off it, and I wasn't on a strong dose, I was just building up and stuff, and the week afterwards I don't remember at all. I just cannot remember it at all. Apparently I just floated around wearing really bizarre clothes and saying things that didn't make sense. I think I was quite happy but I don't remember it and that's probably not a good thing [laughs]. So I mean antidepressants and me, not a good relationship and I don't think. I know they help a lot of people but I don't think they are necessarily a good thing to take and I think that there are things that can help you deal with depression better, like having supportive family and seeing professionals, talking about how you feel, having counselling and hot chocolate, lots of hot chocolate and books [laughs].

 

Helen says forums are great because they're always available. She can ask anything and not feel...

Helen says forums are great because they're always available. She can ask anything and not feel...

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The epilepsy forum, the National Society for Epilepsy Forum, I could not recommend that enough, those people are fantastic. It's the most amazing support group because there are people from all over the UK, there are people with all sorts of different forms of epilepsy and I could ask them any question, they would answer it almost straight away. They would never, if you want to ask a question on there, it doesn't matter how silly it is, how basic it is, how trivial you think it is they will answer it and they will answer it in a sensible way and they will treat you like a human being because they have had the same problems themselves and they know what it is like to go through. So forums like that are absolutely amazing.

It's good for me because it's always there for a start. I don't need to travel. I don't need to go out of my way. I can just log on and there's a whole network of people and you become kind of friends with them and they have outings and things. I mean I don't think that my epilepsy is something that affects me on such a day to day basis I need to use it as much as I did when I first found out. But I think it's good because, as well you know, people don't always like to talk about their epilepsy but on the forum they feel they can. There's that anonymity behind it. They know that you know if people search, if people Google their name on the internet they wouldn't necessarily find them on the forum. And because I'm quite happy to talk about my epilepsy, I want everyone to know about it because it's better then no one knowing and it's better than rumours going round and me not being in control of what people know about my epilepsy. I'd rather lay it all out on the table, explain to people, be as open as I could and you know even if it went to the extreme of having maybe a little leaflet, "Hi I'm Helen. I have epilepsy." It actually would be much easier. But I know that not everyone is as happy as me to talk about their epilepsy and so things like the forum is fantastic and also if you've first got epilepsy or if you don't know if you've it, if you're in the mid-stages of diagnosis maybe you don't want to label yourself on one of the internets having epilepsy so you can just log on and you can have your own little name and it doesn't matter who you really are. It's great and people will just be nice to you. They won't judge you. It's great.

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