Ben - Interview 30

Age at interview: 22

Age at diagnosis: 14

Brief Outline: Ben was diagnosed with epilepsy at the age of 14 and has both tonic clonic and absence seizures. He has tried lots of different tablets but his seizures are still uncontrolled. Currently he is on lamotrigine.

Background: Ben is 22 and currently unemployed. He is single and lives on his own. Ethnic background / nationality' White British.

More about me...

Ben is 22 and currently unemployed. When he was about 12 his teachers noticed he was drifting off in classes and they suggested this might be due to epilepsy. However it was only about a year later, after Ben had his first tonic-clonic seizure, that he was diagnosed with epilepsy. 

He was prescribed Epilim (sodium valproate) which wasn't at all effective and his epilepsy kept getting worse. Ben says his consultant 'kept fobbing him off' and not changing his medication despite really bad side effects, which resulted in insomnia, aggression and psychiatric problems. Ben and his family fought hard to find a very good neurologist who now looks at his life as a whole, rather than just the medical side. Ben has tried a lot of different medications and at the moment he is on lamotrigine, but his seizures are still uncontrolled. He has a major tonic-clonic seizure almost once a week and also has absence seizures. 

In the beginning, Ben says he went through a denial period, coming up to his teenage years, drinking and smoking. At this time he also had a rough patch with his parents. They have since become very close and learnt to "work together". Ben lives on his own and he says it has made him much more independent and mature. As his seizures are so frequent, he has made adjustments to his home, especially in the kitchen and he also has a safe-link alarm.

One of the most difficult things for Ben has been finding work. He does a lot of voluntary work because he wants to work and, “not sit in my house all day with nothing to do”. Ben would want to have a job in manual labour and has also thought about self-employment, for example setting up a bike workshop. Finding work is also complicated by the fact that he doesn't have a driving licence and is restricted to his local area. Ben says this is quite hard for him and he just “wants a reason to get up in the morning”.

Ben says his social life is good and he goes out to pubs and clubs with his mates. He says he prefers being single at the moment as he feels that his epilepsy has put pressure on his girlfriends in the past. He says dealing with epilepsy is also easier with his male friends with whom he can have a joke about it and don't need to make it into such an issue. Ben knows of the risks with epilepsy; SUDEP and possibility of injuries when having seizures. Ben's approach is to live for the day and he is optimistic that they will find medication that will control his seizures!

Ben says he was 'discreetly discriminated' against at work and asked to leave a job shortly after...

Work, after they [in work] realised [after a severe seizure] how serious it was they were very, very funny with me. Whether it was to do with insurance, whether it was to do with health and safety, I don't know, but they watched me something rotten so they could, I think, find a reason sort of get rid of me. And they did for a really, really petty thing and told me that I could either leave of my own accord or it would go through a serious case as to something. So I left of my own accord and finding work after that was very difficult. There's a few times even though companies can't discriminate, there've been a few times when they've discreetly discriminated, by going in there explaining the whole of how I can work for them, what I could do for them. A few times they've said, 'Yeah that sounds great, ideal pretty much of what we want.' Then at the end I've explained about the epilepsy, and it would, their face would change and it would be, 'Okay we'll get back to you.' A few times I've just thought to myself 'I don't really wanna go through all that hassle and then say it at the end if it's not gonna be', you know if they don't want me then fine.

Ben says he's trying to improve his overall lifestyle, eat healthily and get enough sleep. He...

The things that I do I try to keep myself a bit more healthy as well, I mean especially living on my own, it was a fair few takeaways. I've started to try and improve my health style as well as my lifestyle, and the bad things of my lifestyle and social life. You know, getting proper sleep, making it a bit more regular, see what works and what doesn't work, try and get a bit more of an idea so I can give feedback to the consultant and they can make a bit more of a diagnosis about it. But I mean I'm 22 now, it's been pretty much the same since I was fourteen, fifteen, it's been, it went from an average of every two weeks to every week and it can be anything from half an hour, where I've woken up after one and gone into another, only happened twice though. From, if you like, that six days to two weeks so after a week if I go for another week or two without the seizure I kind of develop more and more paranoia, depression, all that sort of thing that goes with it as to 'come on, you know, just have the fit so I can get back to normal lifestyle'. I've noted down a few points, stages I've been in, areas I've been in where I haven't ever had one. Sort of I tried to note down those points and what maybe could be in the surrounding or what I'm doing at the time that could have an issue. Bu it's the best you can do really. I see the consultant every six months so it's, I have to have things prepared over that duration of time, I have to get things pretty prepared, so I can give necessary feedback. But it's, yeah it's pretty much the best I can do.

Ben had a bad reaction to one AED, which caused insomnia and made him feel edgy and anxious....

Ben' A couple of tablets that they prescribed me, one of them had serious side effects to the point where they caused serious psychiatric problems and I ended up in a psychiatric ward for three days so they could sort of keep me safe and give me the necessary care that I needed to flush it out of my system.

Dad' The general opinion is that it was sparked off because of lack of sleep. The tablets that they tried him on kept him awake, I think for about, something like about, you'd been pretty well awake for about 72 hours hadn't you?

Ben' Yeah, at least.

Dad' He developed this, they diagnosed it as'oh what was it.. Anxiety Psychosis, that's it.

Ben' It was difficult as well because when it started off, when I just sort of noticed that things weren't right and I wasn't getting enough sleep and I was a bit edgy, one doctor suggested that it was probably just due to I'm getting used to the tablets. So one idea was to double the dose. I mean obviously any sensible person would take me off of them but, no he was quite sure that it was a case of doubling the dose. Which obviously really went tits up, and caused worse and worse trouble, insomnia was a serious problem. Anxiety, everything about me just changed completely, my friends noticed. But now we've gone through all of that and it finished off with me in the psychiatric ward and basically they said, 'Look it's not right, it can't be done this way.' I managed to recognise the early signs when they put me on other tablets if they were gonna work or not, and I kind of got to the point where I had to decide myself. Luckily I've got friends who were noticing. I'd say to them, 'Right they started me on a new tablet now, can you sort of keep an eye on me, from the outside?'. They'll be quite discreet about it, but at the same time get to the point, so if I'm being edgy with them, they'll say. Which is very, very handy, they're very good to me, I think especially with the seriousness. But all the different tablets they tried, I'm able now to notice things like the insomnia, the anxiety, and now I've got more contact numbers and people that I can call. Nurses that I can speak to, to say, 'Look is this right? this is what I'm experiencing, I've just started these tablets up.' And they give me some feedback as to whether or not it's a good idea to carry it on, or whether to stop them.

Now they're gonna start me on a new type of tablet soon, but they're running out of tablets to give me so they're going for the mix of tablets, see what happens then, which could be quite interesting. But the whole aspect in general about tablets is a big' to be honest I think it's more of a problem for me than the epilepsy itself. I've managed to pretty much deal with the epilepsy, accept the facts, have a laugh about it in certain cases. But with the tablets you don't know what's gonna come up, you don't know whether you're gonna be in a psychiatric ward or you're gonna not be able to sleep for 72 hours, whether you're not gonna be, you know, end up being all nasty to your friends, edgy with people, it's difficult. I think that's probably the worst out of all of it.
 

Ben prefers being single. He feels women are more sensitive about his epilepsy and that it's not...

Ben' I think I prefer to live the single life. It's nice to have the support but at the same time over time having a girlfriend you can see how much pressure it's putting on them as well. And it does get to me at the same time, even though they won't say anything about it, they won't put it across. They just on the outside appear to accept it, but I can tell. In certain cases I've ended it because I can't see it like that, I can't see them like that. A couple of occasions I've ended it with a discussion about it and said, 'Look, you know, at the end of the day'' and they've denied the fact that they're affected by it but they're going to. At the end of the day I can see that it is affecting them. I think with male friends, not a problem as such because with the lads they can catch me if I'm gonna go down, I've known them for longer so they're more used to the signs before I go, a lot more helpful. It does affect them but we have a laugh about it, with your mates and they deal with it. I deal with it just having a laugh about it.

But I've found with women, relationships it's more, they're a bit more sensitive about it you can't really have the same laugh as you would with your mates. I prefer in a way to keep the single life and just not mention it. Unless they are previously aware of it, let's say if they've seen me about in town or something like that and I've gone down or they'll say to me, 'How did you get that scratch across your face? How did you get that cut on your hand? How, what's happened to you? What's happened to your neck?' all this sort of thing. On certain occasions I'll make up something, you know. Something sort of hardcore, 'Yeah I was out and about and this situation happened and, but I only got a scratch, you should have seen them.'

Dad' Got jumped on by twelve people.

Ben' Yeah. Yeah I would still take them all on. But the people who know me they know what it is, they know that I'm not that type of person but they know where the cuts and scratches come from. They'll simply look at me and say, 'Oh you had another one then?' And that's my friends, 'cos they know.

Ben has had a seizure twice when having sex. He says the best thing to do is to make a joke about...

I have done twice [had a seizure during sex], at the end of the day I've had to make a joke of it. Because obviously when you have a seizure, all your muscles tense and at the time with the girl, it got to the point where I went into the seizure and she couldn't get up 'cos I was on top. And eventually when she did manage to get out the way, we were in the bed at the time, so it was okay she could put me down and relax. She was fine with it, but as I said all the muscles tense up, so in a way the only thing I can do is make a joke of it and say, 'Well, don't worry about it, I'm shaking, all my muscles are tensed up, hop on and wait till the end.' But it's the only thing you can do really, make a joke of it, have a laugh, yeah it's happened twice now. Once with one girlfriend and once with another and but they were pre-warned, at the end of the day, they all knew the issue. But as I said, they could make most of it [laughs].

Though Ben's had injuries before, he enjoys riding his bike and doesn't always wear a helmet. He...

Things like riding my bike, it's the only way I can get around really. I could walk but I like riding bikes, I've always been into bicycles and repairing and all sorts. So at the end of the day that's one thing that I think to myself, 'yeah okay I shouldn't be riding a bike but, I'd probably do more damage to myself, standing next to a table than I would going down the road on me bike and having one', which has happened a couple of times. And I've found myself to have less damage, less bruises, less cuts than I have had in other situations which you would've thought to be a safer environment. I had a lot more cuts and bruises and things like that so in a way you have to sort of turn around and say, 'Oh yeah, yeah, it's a case' but if I was to sit there worried about health and safety and issues like that all the time I'd just be constantly paranoid you know. It's making jokes of it and just basically saying, 'Yeah it's an issue but hey' - not only keeps me going but makes me live life a bit better, I think.

Living on his own has made Ben more responsible. He lists the adjustments he's made to his home:...

Ben' Living on my own I think has not only helped with responsibility but has also helped with maturing me a lot and making me realise that there's more to life, there's things that you have to do, managing your money, all sorts of things like that were to do with the epilepsy. It's helped in a way that I've been able to be on my own and not have people, although it's reassuring in certain cases, not have people immediately jumping in when, say I have glitch if I'm gonna have it I have it. My place is pretty padded out I mean I can't have a bath, so I have a push button shower that turns off after thirty seconds and you just keep pushing the button. 

Dad' Got no gas hob.

Ben' Radiators.

Dad' No gas oven.

Ben' Yeah I haven't got a cooker which is a shame seeing that I enjoy cooking. So I have to deal with a timed oven, a thermostatic pan so that it stays at the temperature it is and it doesn't obviously heat up too much, and a microwave, so I've gotta be creative with those really.

Dad' Yeah it actually limits his diet really you know.

Ben' Yeah when it comes to the healthy eating.

The best that they have managed to do is, with the shower, padded and blocked in radiators, because a couple of times I've had a seizure, got stuck with my arm behind the radiator, luckily at the time my parents were there to pull me out. But if I was on my own that would be a serious issue, so they blocked all the radiators in, padded the surfaces, I have to be responsible in the fact of looking at surfaces and realising for myself that it's gonna be dangerous. For example I would love to have a glass table, but it's not practical, you know. And I think that's helped me with the responsibility as well.
 

Ben got help from Workability and Royal British Legion Industries (RLBI), who can also help with...

Ben' But I do have a lot of help from Workability, which is a place that helps people with disabilities find work. And the RBLI, I couldn't tell you what it stands for without finding the paperwork, but they've been very helpful. So that's reassuring.

Dad' They've been helpful to you but they haven't actually found you anything yet.

Ben' No. I think that's more a case of them having to come back to me but RBLI is more my interests and what I would like to do, how I would like to work. Whereas Workability is finding the jobs available in the area and saying, 'Is this a good idea for you? Is this not travelling-wise?' See with the RBLI they've said to me that there's, I can't remember what was called now, something like 'getting into work' or 'help getting to work' where they will arrange for a taxi to pick me up and drive me to work and back again. So I can explore work outside of the area which is wonderful so there's that option as well, yeah it's quite, quite helpful really.

Ben was unhappy with a consultant who wouldn't change his medication that wasn't working. He said...

Then it got worse, I had a consultant who was giving me tablets and keeping me on the same tablets even though they obviously weren't working and each time I'd go to see the consultant he pretty much fobbed me off. Give me some doctor talk and fobbed me off for the next three or six months. That carried on for about, probably about four years, five years and we fought. Obviously it was getting worse, getting to the point about on average once every two weeks and we fought quite hard to try and get a good consultant, a good doctor who was actually gonna look out for my needs. More than anything as well as trying to sort it out as to what was causing it, it's still not under control. It was originally said by this previous consultant that it was probably adolescent and it would clear up, even though it was getting worse. But when we finally went to see the good consultant he started to take more care about me, speaking to me about my social life, helping me out putting me with epilepsy nurses that I could talk to. And I was a bit more reassured once that kicked off.

Ben's dad says that school was very difficult for Ben. He was very active, and found it difficult...

Dad' There was a lot of negative stuff coming out from his schooling, other members of the family, so it made life very difficult.  Ben didn't seem to help that by being very, as I say, very active, very mischievous, very difficult to control. I mean in classes he was getting in all sorts of bad reports from school over Ben's inability to sit still in class, he had this butterfly brain, couldn't concentrate. Obviously we know now that it could well have been linked with the condition which later developed at the age of fourteen. But of course at the time it was, you know Ben wasn't fitting into this system which required a certain perfect child to be able to sit still in a class and follow the lessons through, calmly and quietly. We were having the same sort of thing at home and it kind of came to a bit of a head about the age of sixteen.

Ben describes an incident where he had a seizure while chatting up girls in the pub.

It is difficult when it comes to relationships but at the same time, I suppose in a way it's a risk you gotta take really. It is a bit of a pain as well when, a couple of times I've done this, you know the whole talking to a couple of a girls and the whole charm, really putting the effort in, giving it my all, and then, bang [clicks fingers] I go down and you think, 'ah God it was all wasted for nothing,' [laughs]. In certain cases they've come back to me and said, 'It's broken the ice a bit more.'

Ben had absence seizures in school and 'staring off' or 'ignoring the teacher' who thought this...

Basically it all started when I was about twelve. A teacher in my primary school noticed that I was sort of staring and ignoring her, that was brought up. She thought I maybe had epilepsy because I was staring off and she was calling my name and I wasn't replying. But that was a big issue as to whether it was just because I was male or not. So there was a big thing, issue about a panel of doctors that I went to speak to about events to see how that kicked off. 

Ben's relationship with his parents was difficult after his diagnosis and he argued a lot with...

Relationship with my parents over the years was, it was difficult to start with once the diagnosis all came clear. You know, the way me and my dad was very bad, we didn't get on at all. And I was close, very close to my mum, and with my Dad it was, it was constant arguments, physically aggressive to each other, but there was, it was always like that. Things died down a bit over time as I became older, I think I got to the age of about nineteen, was it nineteen' And once I'd sort of accepted the fact that, you know, me and my parents, my sister and me, had accepted the fact that it was, I had epilepsy it was the case what are we gonna do about it. We have to work together.

Anxiety and insomnia were side effects of Ben's epilepsy medication. If he is at all concerned...

Insomnia was a serious problem. Anxiety, everything about me just changed completely, my friends noticed. But now we've gone through all of that and it finished off with me in the psychiatric ward and basically they said, 'Look it's not right, it can't be done this way.' I managed to recognise the early signs when they put me on other tablets if they were gonna work or not, and I kind of got to the point where I had to decide myself. Luckily I've got friends who were noticing. I'd say to them, 'Right they started me on a new tablet now, can you sort of keep an eye on me, from the outside?'. They'll be quite discreet about it, but at the same time get to the point, so if I'm being edgy with them, they'll say. Which is very, very handy, they're very good to me, I think especially with the seriousness. But all the different tablets they tried, I'm able now to notice things like the insomnia, the anxiety, and now I've got more contact numbers and people that I can call. Nurses that I can speak to, to say, 'Look is this right? this is what I'm experiencing, I've just started these tablets up.' And they give me some feedback as to whether or not it's a good idea to carry it on, or whether to stop them.

Ben says he prefers his mates to be blunt and make a joke about him having a seizure rather than...

With the humour aspect' say we'll talk about doing things as a group of mates, and certain circumstances where I'll go out with friends it'll be little comments like, 'Oh the last thing we want to happen here is for Ben to go down'. I'm really the same saying things like, 'Yeah I suppose I'll bounce off there will I?' You know just being blunt about it, you know. It is an issue, you don't have to discuss it as such but discreetly making jokes about it. It's easier that way than it is to say, 'Look if you're gonna have one, you know, tell me, sit down, relax, okay, not a problem, are you alright? Are you sure?' To just turn around and say, 'If you have a fit now I'm gonna be really peed off.' 

Ben's mates 'take the mickey' out of him when he has an absence mid-sentence on the phone and...

I'll have petit mal and where I have petit mal before I go into a grand mal, I'll stutter. So like with situations they [mates] will take the mickey out of that. You know, talking on the phone and ordering a pizza, we make a laugh out of it in the case of can you imagine ordering a pizza and then sitting on the phone and saying, 'Yeah I'll have a peh-peh-peh-peh-peh-peh-pepperoni pizza please'.