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Martyn - Interview 43

Age at interview: 22
Age at diagnosis: 12
Brief Outline: Martyn was diagnosed with epilepsy at 12 and he's had both tonic-clonic and absence seizures. He has not had a tonic-clonic seizure since he changed onto Keppra (levetiracetam) and Epilim (sodium valproate).
Background: Martyn is 22 and full-time university student. He is single. Ethnic background / nationality' White British.

More about me...

Martyn is 22 and studies German at university. When he was about 12 he started having absence seizures in school. He wasn't aware of them himself but as they started to happen more regularly, his teachers and his dad recognised something was wrong. He was seen at hospital, had tests and was diagnosed with epilepsy. He was put on ethosuximide which controlled the seizures well.

Because Martyn was pretty much seizure-free in the early years, he didn't tell many people in school he had epilepsy. Later on, during his GCSEs, Martyn started having tonic-clonic seizures and at that time decided to tell his friends he had had epilepsy for some years. Since finding out about his epilepsy, Martyn says both school and his friends have been incredibly supportive and understanding and he hasn't experienced any negative attitudes or bullying.

When Martyn started having both absence and tonic-clonic seizures his medication was changed to Epilim (sodium valproate), but he still kept having seizures every three to six months. Martyn says that he's always felt that the epilepsy medication has "slowed him down" and has also affected his sports performance. Martyn loves team sports and says, considering the vast amount of exercise he was doing, he wasn't gaining maximum results because of the medication. Martyn says that in fact the medication has been more disruptive to him than epilepsy itself. Currently he is on Keppra (levetiracetam) and Epilim.

Martyn spent the year before the interview in Germany as part of an exchange programme of his university course. He said getting the medication abroad was very complicated. He eventually ended up seeing a neurologist in Germany and getting his prescriptions locally, which worked out really well. Martyn says he's never let epilepsy stop him achieving his goals and has climbed Mount Kilimanjaro after his diagnosis! He says epilepsy has made him "stronger" and appreciate the unfailing support from his friends.

 

Martyn started a new AED but hadn't realised he should be reducing the old one at the same time....

Martyn started a new AED but hadn't realised he should be reducing the old one at the same time....

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I started University and after a couple of months we decided to change the medication, and this was disastrous in terms of switching medication. Part of the problem of being a student in one place and having a consultant in, my consultant's in London, my doctor's officially in my University town and obviously I spend, you know, a third of the year back in my home town anyway, in which case when I want to go to a doctors to pick up a prescriptions I've got to be, I'm not a permanent resident so I've gotta fill in forms every time I go, my permanent position is in [town name], sorry my University town.

But we, part of the problem where I'm moved medication was with all this confusion I got told to start on a new medication and not told to come off the other one, so the other one which was making me a bit a bit tired and I was on quite a high level I was still on that whilst starting to take a new medication which ironically had the effect of the previous medication made the new one stronger, double as strong so I was basically overdosing on epilepsy medicine [laughs] for, for about a month before I realised what was going on. I didn't, I didn't get it because I'd been taking, it was obviously a point where the medicine just got too much for my body and obviously no one had told me to come off the original medicine, I assumed they were gonna tell me that later but, as I was staging up the new medication I was not staging down the old one. And that was the problem I was already on too a high dosage for my bodyweight and it was basically like being drunk all the time [laughs] it was sort of I'd reach for a door, I'd, you know, I'd think the door was close to me so I'd literally pull and the door would be a good few centimetres behind that. I had period of seeing double vision, one day it just wouldn't I, it was kind of cool at first like double vision [laughs] it would come five minutes and then it would go away. And then one time it just didn't go away so I was stuck a day with double vision, thinking my eyesight had just gone completely, like doolally, and vomiting all sort of things I mean you can pretty much think of overdosing on, on anything like I had shaking, the shaking was uncontrollable, I couldn't lift a, a cup without shaking, I mean that's still a kind of, I think that's a side effect, a slight side effect of some medications my hand control isn't great but, eventually I figured out what it was and they told me to quickly come off the other one, the, the medication I'd been on originally. 

And, you know, my dad came to collect me from the University so that I could sort of go and, just relax for a couple of weeks at home, have everything done for me. And I remember going to a service station, having to pick up a drink and literally my hand would be sort of just, completely, it was this the, the bizarre feeling, you know, been drunk before and this was like being permanently drunk for a month. It was scary, it was really scary I didn't know why it was.

 

When Martyn went to study in Germany for a year, his parents had to send him his medication....

When Martyn went to study in Germany for a year, his parents had to send him his medication....

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The problems I had in Germany this time were that I was trying to make decisions about my medication with people in London, had to book appointments in London when I was coming back about changing medication but also about getting medication because my parents live, in this hometown and my university, it's where my doctor is. And because I was changing medication I didn't have, a repeat prescription so, it was completely, ridiculous, you know. I had to phone up my parents when my medication was running low, parents had to phone up the doctor in my university town, doctor had to fax the prescription through, my parents had to collect the medication and send it to me in Germany.

Now by going, this could've all been resolved a lot quicker if I'd gone to a neurologist in Germany because as soon as I went there he was able to give me the prescriptions which would made a lot more sense but that system doesn't seem to, it's stuff to do with funding as well like whenever I've been back in my hometown if I'd run out of medication they sort of almost a grown man they've scolded me for not getting enough medication when I was in my university place. Simply because that's coming out of their, funding presumably, the cost of medication. But you know if I'm a temporary resident as far as I'm concerned, here, as I say I have to fill out new sheets every time I go to the doctors, but I spend a third of my year in my hometown you know, so it's not really that temporary considering I only get my medication on one or two monthly sets at some point I'm gonna have to get medication since the system seems slightly flawed. That was a major problem with going abroad was finding out how I was gonna get my medication basically.

Because the university well they say your doctor is still in [town name] and what's advised is, what's advised is to stay with that, but I don't think they really understand how complicated that can be in terms of, especially if you are changing medication. The doctor can't prescribe a six-month-one or something, they've got to do it, like two weeks or four weeks or something to see if it's having the effect it's ridiculous. Someone should've said at the beginning of that year, 'go and find a doctor in Germany and get them to do it', but no-one did and I'm surprised about that actually, I'd have thought there'd have been more links between the services.

 

Martyn didn't benefit as much as he could have from the amount of sport he was doing and feels...

Martyn didn't benefit as much as he could have from the amount of sport he was doing and feels...

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I always felt slowed me down slightly, and that's quite an important point. I always felt I was a couple of steps' I mean in terms of being a massive problem in what I did, it never really came up. Like I say, the driving, I was prevented from driving but in Sixth Form I went with a group called World Challenge with some, with ten other students from my school to Africa. I ended up climbing Mount Kilimanjaro. It didn't prevent me from doing that, it didn't stop me from being in the first eleven for the football team for my school, I played Sunday league regularly every week, I played in an orchestra. 

During that time it wasn't, it would happen, it would be something that would catch me off guard. Whenever I was, they said it was because of stress and tiredness, so obviously it had manifested itself first before a mock exam for GCSEs, that's how it came about. I did feel to a certain extent that the medicine did slow me down but I was active, I was fit, it just meant recuperation was a bit' I felt for the amount of exercise I was doing, I should've been really on the ball and I didn't always feel that. It didn't really stop me but I felt I should've been like Superman, you know, in the sport I was doing. I felt, it's a weird feeling to have really, 'cos you know something's not quite right. You know you're a little more tired than the other people in the team, you know, and I'd put it down to the medicine really. So the medicine was probably more of a factor in, maybe being a bit disruptive than the epilepsy was.

 

Martyn has lived in Germany and went to see a neurologist there.

Martyn has lived in Germany and went to see a neurologist there.

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The decision of going abroad was never mine to take, it was part of my degree. Where I study you have to do a year abroad, I'd already been out there 'cos like I mentioned earlier, I went to a language school for a month in Berlin, because my dad had taught a girl who had done a similar thing. And then later that year I went back out to work on this farm, and then, I went back out to work again the following summer, I got sort of an internship in some geological firm. And, you know dated a German girl for the time I was out there. I think how it affected me I learnt in those sort of areas rather, I was really not worried about going to Germany with the university because I'd already experienced it. As it was when I went to Germany this time the medication went haywire, so in that sense it was different. But in making the choice, I didn't feel that it was any different for me going to a university in England or me going to Africa. What it is, you're away from home, made me feel slightly more lonely at time because that wasn't something that had ever really been affected by my epilepsy. The only problems I had, well the times I went out before I was able to take enough medication with me. 

What about the experience of going to the neurologist in Germany, what was that like?

Luckily my German was good enough to talk to him about what I wanted to do. When he wanted to put me, because of the brands as well though, it's quite hard and I went to the doctor the other day just to check that the English medicine I'd got, that I'd picked up in England, was the same as the one he'd been giving me. I was fairly sure it was but, the design was slightly different and the brands were different, and I didn't know if I [laughs] was taking the same stuff so I went to check. We managed to get through what was happening and he was fairly' to be honest with you, he was a rarity 'cos most of the doctors will speak fluent English in Germany. Like I remember when I'd had, when I'd been running and I fell over and the ambulance got called, the guy who came to me, one of the guys came to check up on me and you could tell he was desperate to practise his English. Now he was a proper, really high up, he was their neurologist at that University hospital and he came to me to try and persuade me to start switching drugs with him and I turned him down at that point because I was sure things were gonna get sorted. Eventually I ended up seeing a different neurologist but he came to practise his English with me, his English was so good. Generally in a country like Germany you don't have problems to do with not understanding things or. And like it, like I say Germany was really efficient in what they did there.

 

Martyn was told he might outgrow his absence seizures but when he later developed tonic-clonic...

Martyn was told he might outgrow his absence seizures but when he later developed tonic-clonic...

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I was told you could grow out of it there's a good chance which made it devastating for me to develop a new type actually. I remember the day I came back from, school after I'd, after I'd had this fit, and it was a sort of crashing I remember. I like to sort of play with a piano and write sort of music and I think I wrote the most depressing song in the world [laughs], just it was hard, it was a hard thing to take because, obviously it's literally life altering, you know, especially if you've been told there's a possibility of it going away, and it was quite well controlled and then this comes around it's, it's a big smack in the teeth. I think, I'm trying to remember, I think my grandfather was really, disappointed as well 'cos he had epilepsy and he'd always worried that it, it had been his fault, he'd passed it on to me. They never found it, I don't think it's genetic in any way but, but there was no reason for that. But, it was definitely a punch a kick in the teeth to feel that.

 

Martyn kept his absences a secret for years and learnt to think quickly 'on his feet' when he...

Martyn kept his absences a secret for years and learnt to think quickly 'on his feet' when he...

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When I first got them, I managed to, I became a really quick thinker because I had to pull myself out of situations. I had to say, 'Sorry I've, God I had a heavy night'. Or something but I was eleven so I never had a heavy night in the sense of drinking but [laughs] it was a bad night you know. Whereas the ones I have now if I have a petit mal seizure, I'll still be slightly disorientated afterwards I won't be able to think like that. I don't think that's to do with the medicine or if it's to do with it's just progressed slightly stronger. The reason I had to admit to so many people is because I couldn't think on my feet straightaway. You see a look of someone, you're chatting to them and suddenly, you realise, ah no it's happened again. But I wasn't able to think quickly enough on my feet to cover myself for that, because I felt a bit mucked ups. Now there are times when I think I can know if it's happened and because there'll be that slight sensation in my head where you think I wouldn't be able to think on my feet really quickly right now. And it's so minimal but it's the difference between being able to completely make an excuse and brand new straightaway, from coming round, seeing their face and straightaway within a second saying, 'Oh sorry, tired', to then having to see their face and say, 'Did something happen?'. Because I can't react and I'm not that straightaway. But the only way I really know is if I'm with someone, talking to someone or if I'm running and then I've stopped, I know I've had something.

 

Martyn has had many injuries after a seizure, including burning his face with boiling water.

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Martyn has had many injuries after a seizure, including burning his face with boiling water.

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It seemed at one point I was always injured, I always had a burn or, a cut. I don't know how they happened but I'd put the kettle on one day and then came around and was burnt all down my body I'd put scalding water on myself. I don't really know how it was crazy, I was standing up so it meant I must have had, sort of minimal grand mal seizures where my head blocked, somehow I managed to pick up the kettle which had just boiled and pour it down my arm. I came to not really knowing what was going on, something wasn't right. I didn't realise it was pain until I looked down and saw like everything, so I jumped straight in the cold shower. And then there's just countless examples, I'd wake up I'd had one and I went through a period of drinking loads of tea, obviously you need boiling [chuckle] water for that. I came round, my face burnt this side because I'd had a fit and ended up in, knocking over a glass of, knocking over a cup of tea and having the fit in the boiling water on the ground [laughs]. It was just like really ridiculous.

 

Martyn feels lucky because everyone at school was understanding. Others sometimes found his...

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Martyn feels lucky because everyone at school was understanding. Others sometimes found his...

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School they were great too, the students were great I think I was really lucky to be at that school, but everyone was understanding and fine with it. I mean when I was in the Year Seven it was a funny thing and again when a guy just has his hand up to answer a question and gets picked to, you know, and doesn't answer for three seconds and then it's like, what's going on? It's funny you know, people are bound to laugh at that but not because it's epilepsy, because it's just a bizarre situation. I think, if they'd known at that time there'd been no laughs. People always say kids are really, kids can be really cruel and hurtful but, I've never been picked on, I've never had problems with anyone.

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