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Epilepsy in Young People

Epilepsy medication

Epilepsy is usually treated with anti-epileptic drugs (AEDs), and many people have their seizures successfully controlled in this way either by taking one type of AED (monotherapy) or a combination of two or more AEDs (polytherapy). There are different kinds of AEDs. Which AED is prescribed for a person depends on their seizure type, age, gender, lifestyle, other medical conditions and any other medication they may be taking at the time (see resources for links to further information).  If on AEDs it's important to remember the following:

  • No one should stop taking AEDs without talking to their doctor first because suddenly stopping AEDs can cause seizures.
  • No one should take extra doses of AEDs unless their doctor suggests this because taking extra AEDs can make side effects worse.
 

Francesca explains why she has decided not to take medication for now.

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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So at the moment you are not on any treatment?

No.

How do you feel about all that? How have you come to the decision to have no treatment?

Well I think because the seizures are so rare and they don't really cause me too much trouble and we decided that that was probably better than starting medication, because it could take us a while to find a right dose, or a right type of drug that will actually do something for me. So we just decided to rather than to have to go through all that trouble and then contend with possible side effects, we just decided to leave it as it was.

Almost everyone we spoke with was taking anti-epileptic medication. Only one young woman wasn't on medication. For over half of the people we spoke with, medication controlled the seizures. Others had the occasional seizure and a few had quite poorly controlled epilepsy. For a few people, the first medication they had been prescribed worked well and controlled the seizures but many had had a long struggle to find the right medication.

Starting medication

Most people had started their medication straight after they got the diagnosis. Many said that, especially at this point, they would have liked to know more about how the medicines worked and the possible choices between them. Some had looked for more information about medication in medical books and on the internet.

Some people didn't want to start their medicine because it reminded them that they had a long-term illness. 

 

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

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Age at interview: 20
Sex: Female
Age at diagnosis: 13
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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.

 

At first, Paddy chose not to start his medication because he didn't like the 'forced routine'....

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Well I suppose it's just like the idea of a forced routine, as well as it's just having something imposed on me that I had no choice about, that I really didn't like. As I said when I really thought about it, it wasn't even the fact that I had to take them every day, it was just the idea of being forced to do it. I've since realised, I'm not forced and it's my choice and I benefit, there are many people that only want me to take them because it helps me in the end. But I can understand why people don't want to. I was like looking back at myself then now, it did seem a bit, I was being a bit petty really. But I really, I didn't like the idea back then of having it every day. It's 'cos I always think, I don't know I've thought about, well this does still affect me actually like if I go on a night out for example, I have to go home, because I need to go home and take my tablets basically. So there's a limit to how sort of spontaneous I can be, but it's not a, it's a pretty sensible limit.

Well I remember mum and dad trying to persuade me, 'cos obviously they were worried, their primary concern was my health, but I had the worry that if I start taking something like this, then it's for the rest of my life. Like once I start that's it, and I just didn't like, I didn't the idea of having to do something everyday, like I've got no choice, I have to take these tablets everyday. I didn't like that idea. But then when I thought about it I was being a bit stubborn really and just, it was it was like the principle of it, but when I really thought about it there was no need for it to affect anything else, other than the fact that when I wake up I have to take a tablet. But there is no need for it to seriously affect any of my like freedom. So I came about to it in the end, now I think I was just being stubborn. I was a bit a bit younger at the time, and maybe a bit rebellious, going through my punk stage.

So I didn't really like the idea but, I'm glad like I came round to it 'cos one of the fits I had, I really did hurt myself quite badly. The first two were fine, but one I smacked my head on a table, I had a big bruised face and a fat lip, that made me realise that the benefits I get from taking them are easily worth the hassle of just remembering to do something twice a day.

Yeah. You said you were maybe a bit sort of rebellious. Do you remember feeling scared at all?

I wasn't really, I wouldn't say it's being scared, I don't know. At that age I always, I liked to think of myself as like a thinking person I was always really curious, inquisitive about things. I knew that the idea, the basic idea behind the drugs were to slightly dull your mind so it's not quite as excitable at those stressful moments, and, just stops it going over the top. And I just didn't like that, the idea of having to well like dull myself but again like I said I was being a bit stupid really 'cos it's not made it, it's not made a significant difference to me.

People who hadn't started taking their medication straight away said they felt it had been a 'stupid', 'ignorant' or 'rebellious' thing to do. Some had realised they needed to start taking tablets for their own benefit only after they'd had a couple of severe seizures or injured themselves. 

 

Rachael stopped taking her tablets for 12 months, had an episode of status epilepticus and ended...

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Age at interview: 25
Sex: Female
Age at diagnosis: 21
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Basically what happened was, a couple, a couple of months ago, I hadn't been taking the medication for about a year. I actually stopped it was a bit naughty really, specially being a nurse. I stopped taking the medication just basically because you think I've been controlled for a little bit and I decided that, I kept forgetting because I was at work or you know you're on shifts and you sort of come home and it's difficult to get used to it. When you don't actually have a condition that affects you day in and day out and you don't really see sort of the benefit of it. It just was a thing like okay you know I don't need this no more, you know, I'm fine now, I'll be absolutely fine. So I'd not taken it for a year, a couple of weeks ago we'd been out with a friend, and, I got back and I felt really unwell, and I was like, 'Oh no.' And unfortunately I ended up in A&E which was quite embarrassing because I was working there at the time [laughs], so and the sister said to me, 'Can I have words with you.' And I recognised the ambulance men as well which is kind of funny. Since then like I've started taking it again because you think you kind of realise okay it's a bit naughty really I should really take it. It does help you. But I think some of the side effects of medication as well it can be, it makes you feel a bit rubbish, and it makes you feel tired, and you just feel run down and when you're working so much anyway, you have such a busy life it's not something else you need on top. It was a stupid thing to do really, but like anyone who takes medication you know, sometimes just doesn't take it all the time.

It's strange you sort of like you felt like you were getting better or sort of in a way because you hadn't had a fit for a while and she [mum] was just like oh you know, she said 'But you must take them,' and I was like, she says, 'Are you gonna start taking them?' And I said, 'Yes I am now.' I said, 'I think it's freaked me out a little bit cause my housemates said that I'd got to the point where I couldn't breathe and you know if she hadn't been there, I wouldn't, anyway it would have been eek.'

A few people pointed out that having epilepsy made them eligible for a Medical Exemption Certificate so that all their medication was free. For many this was a great financial help. One man who already had a heart condition, and took regular medication for that, said starting to take AEDs was no big deal to him. 

 

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

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Age at interview: 21
Sex: Female
Age at diagnosis: 18
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I do take awful lot of tablets [laughs], for it seems 'cos I've got my epilepsy tablets and I've got my hay fever tablets, and I've got my inhalers 'cos I'm asthmatic, and I've unfortunately got a back problem, so I've got like painkillers for that. But fortunately the one good thing about having epileptic is that you get free, you get a medical exemption certificate. All your prescriptions are free and that is the best thing ever [laughs]. I mean I couldn't really ask for anything more. That's just everything that I want really. So yeah, it's got good sides and bad sides.

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

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

Absolutely, it is a benefit.

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

Remembering to take medication
Epilepsy medication must be taken at regular times for it to work properly. Taking medication regularly and not missing doses is an important part of trying to cut down seizures and reducing the risks associated with seizures. If this proves difficult, it should be discussed with health care professionals who may be able to offer support and advice.

 

Kimberley's seizures were better controlled after she started taking her medication at set times...

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Age at interview: 17
Sex: Female
Age at diagnosis: 6
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Well I think it was because I'd taken my medication at different times, like in the morning when I get up and that could be any time, then at night before I go to my bed, but now I'm taking them at set times and that's working.

Okay. How do you take your medication at the moment? Is it'?

Well I take it at the same time every morning, when my Ma wakes me up before she goes to her work, then about 11 o'clock at night. Yeah and it's spaced out so it's helping.

Do you're on lamotrigine now?

Yeah.

Some people said that a routine of taking tablets, for example when going to bed and when getting up, made it easier to remember to take them. One man said that taking his tablets had become just as automatic for him as having his breakfast! 

But some found it hard to remember to take their tablets at set times. Many people said that they couldn't remember to take their tablets at set times because of the memory problems, which were partly a side effect of the medication. One woman with diabetes and epilepsy said she found it difficult to remember the different times she needed to take her epilepsy medication and inject insulin for her diabetes.

 

Simon says it's sometimes difficult to remember to take his tablets. He doesn't like taking them...

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Age at interview: 21
Sex: Male
Age at diagnosis: 17
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Simon' I think it's quite a sort of thing that a lot of people have it in life, and some people can't really help it. It's just, they have in their life and they take sort of medication for it.

Yeah, yeah, do you take medication?

Simon' Yes. Yeah.

And do you remember yourself or does somebody remind you?

Simon' I sort of remember to do it myself.

Keyworker' And we remind you as well don't we.

Simon' Sometimes I get reminded because sometimes, during the mornings I forget and 'cos I would completely forget and go off and do something else.

Yeah, yeah it can be difficult to remember every day, every time.

Simon' Yeah, yeah.

Yeah, do you think the medication helps you?

Simon' Yes it does yeah.

In what way do you think it helps you?

Simon' It helps me, you know not to have like seizures and stuff, you know. And one of them helps me with my concentration and I think it's quite a good sort of thing to have. But sometimes, I don't really like sort of taking it but I have to take it at times.

Why don't you sometimes like it?

Simon' Because I just don't like taking tablets really but I have to just in case anything happens or…

Things that people said particularly interfered with their medication routine were shift work, irregular lecture timetables at university, travelling, irregular sleeping patterns and any other changes to the usual routine.

 

Omar says he used be to be 'reckless' and take his tablets very irregularly, so was having...

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Age at interview: 28
Sex: Male
Age at diagnosis: 15
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And how long was it that you didn't take the medication at all?

I'm not sure, 'cos I'd be on and off. I'd be like, you know, there were like a few weeks I'd not take it and then think 'well I should take my pills' right my medicine ran out and then I wouldn't get a repeat prescription until I'd gone and remembered that my medicine had ran out and just gone and taken it to get another prescription. There's the whole procedural thing of having to go with that, but that just comes with it.

How did it happen that you stopped taking medication regularly? Was it just not having the routine or did you make a deliberate choice?

Just being reckless. There was like, there's being reckless and there's being rebellious at the same time, I was reckless mostly right. I knew that at times, you'd wake up like you've got a bitten tongue and you know that you've gotta take your pills, you know, so you take them. It's just the fact that it has to be every day and every twelve hours you've got to take one. And not one but, like two because your like medication's changed and then, three then, onwards.

What do you mean by rebellious?

Just being like, you've got this thing like and I don't want it anymore, you know, I don't want that in my life, I hate it. 'Cos it's just there it's like a packet, you know, it has to be popped out and taken out, you know. And now I just deal with it by putting it into the case and I suppose, it's not so big but it's still there like it's on my big shelf, like in my living room and like I keep it there and you know when I've got friends round they see it [chuckle]. So yeah if somebody new comes in they might ask a question about it. And it does say Epilim (sodium valproate) in big letters on it so kind of'

Do you feel like it made you different from your friends and from other people your age, that you had these tablets and you had to take them?

Yeah, yeah. Aye but I've still felt like, you've still got to take part. Like, still you gotta be there for like when your friends are there for you like, so you've got to be there for them.

And how did you then decide to go back on the medication regularly?

Just [organisation name] my father saw a phone number for an organisation called [organisation name], and I phoned up that number. They seemed a bit offhand and said to phone and so I was a bit insistent about it and I thought my dad had seen an advert on the TV about epilepsy. And then they gave me a number for Epilepsy Connections in [city name] and then I phoned them and then I think I was advised to also by the woman at [organisation name] this is, I was advised to phone my nurse because I was still having seizures. My seizures hadn't calmed down as well with my prescriptions so I phoned up my nurse at the hospital and got my dosage increased, so that kinda calmed things, yeah.
 

A few people said that if they were late with taking their AEDs they could feel the difference - feeling shaky for example - either straightaway or shortly afterwards. Several had had a seizure when they'd forgotten to take their medication.

 

Will says he has to be really careful about remembering to take his tablets. If he forgets his...

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Age at interview: 24
Sex: Male
Age at diagnosis: 14
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I'm a bit more wary about it. I mean certainly in terms of relapses I have actually been caught out. It's kind of like waiting for me to not have enough of the drug in my bloodstream just to say right well we're gonna serve you right for keeping me at bay for so long and it's just like [snaps fingers] like that. So, yeah so obviously I have to be very careful in taking it. I mean if I missed once maybe I can get away with it, but twice, you know I'm pretty much in the red. Yeah so it's very sort of dangerous.

Has that happened?

It has once, yeah, and obviously being at university having to get up early and things I'm very wary that it might happen again because of so many things, you know, I've got my books, I've got my portfolio, got this, got that, yeah, and you know, it's one of those real scares of me. It's either right do I, it's just around of me and normally in my jackets I just got this and the mobile phone and I've always got some spare pills just in case. I mean my tablet box is itemised, you know, for the week so I know what I'm taking, what haven't I taken, if I haven't taken in the morning that. Sometimes this goes back to what my father does, he always checks on me, you know, he just sort of opens this sort of wallet up and says, 'Right well he hasn't taken, he hasn't taken this morning's so I'm glad' knock on his door and say, you know, four o'clock well you better have these and then have this evening's at maybe twelve o'clock.' Something like that, yeah. it's just about keeping the balance, yeah.

Can you tell me of the incident when you forgot to take your tablets twice?

I forgot to take pretty much twenty-four hours dosage so I would have forgotten the morning or I should say the evening and the morning, whichever way. I forgot, crockery was smashed, so. It's just one of those things sometimes you forget about it, you know, we live in a 24-hour-world, there's always something on the television [laughs] worth seeing, you go out to your mates and'

People had different strategies to remind themselves to take their tablets on time, including itemised medication boxes and wallets they could carry around with them. These boxes have slots for each day of the week and can help people remember to take tablets every day. Some were reminded by a parent or a boy/girlfriend. One young woman used her mobile phone alarm to remind her to take her tablets. 

Some people who had moved to a different place to study but were still registered with their local GP had had difficulties getting repeat prescriptions. One woman had to chase up her prescriptions from the pharmacy many times and even had to go without her tablets when the pharmacy didn't have them in stock, which made her really angry.

 

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

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Age at interview: 22
Sex: Male
Age at diagnosis: 12
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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.

When medication doesn't work

For many young people, finding the right medication was a struggle and some were still trying to find a tablet which would control their seizures. Quite a few were on more than one AED, either two or three different tablets.

A few people said they'd tried nearly all the possible epilepsy medications available over the years, without success. One man had been on so many different epilepsy medications that he felt he could have challenged the world record. Another had been given over twenty different AEDs over the years. 

 
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Morven has tried a lot of different tablets but none of them has completely controlled her seizures.

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Age at interview: 21
Sex: Female
Age at diagnosis: 8
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They gave me lots of the EEG tests and MRI scans and all the other ones to see like whereabouts in my brain they were coming from and like just what was needed, and they tried me on practically every type of medication they could think of but nothing really did seem to control it completely. There were a couple that did control it very well, that was lamotrigine and clobazam. And the lamotrigine, I'm still using that now, but it did kind of wear off for a bit 'cos my body kind of got a bit used to it, so couldn't control it as well as it did for the whole time. Clobazam, it worked perfectly but nowadays, it can't be 'cos my body just got too used to it. But I do use that, if I have one during the night 'cos the ones that I have during the night they can just keep me awake after having one, 'cos my brain just can't get back to sleep, but the clobazam it's a very quick working one. So if I take one of them if I find myself awake at say 2 o'clock in the morning or something, it gets me back to sleep really quite quickly. I just can't take that regularly 'cos you know if I was taking it every single day, my body would just get used to it. So I have to be careful not to take it too much. So it was just over like ten years I had all these tests that they could think of and they tried me on lots of tablets, but nothing really worked completely.

Changing from one medicine to another is a long process because the current one needs to be slowly reduced and the new medicine gradually introduced side by side. One woman felt that since she was diagnosed at 18, she had always been in the middle of a medication change, trying a different type of AED.

 

Nick says it's important not to make any changes to medication on your own. He talks about his...

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Age at interview: 21
Sex: Male
Age at diagnosis: 15
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I'm having an appointment with my consultant, 'cos you get regular appointments obviously, in August and, and I'm gonna talk to her about taking down oxcarbazepine because when they're giving you so much information you almost start to feel like you're almost an expert on it. And you take them for so long, you're like, 'Oh, I know all this stuff about that you were telling me, you were telling me these things about this medication, that I know, so doesn't that mean that I know as much as you know, so can I take this one'.?' So I keep on thinking 'Why am I taking down the medication that has a slow release? That's the second most, because levetiracetam by the way is the most advanced, why am I taking down the second most advanced medication that I'm taking? Why am I not taking down this really basic, this decades old medication, you know. Why am I taking this one down? So I thought well if I scale this one down you know. It's always a matter of balance, but then you've also got to take into account the fact that you know fits will happen, well in my case anyway. Fits will happen so you've gotta say well should I really be scaling down my medication or should I just leave it. You know, it will happen regularly then you've gotta say well I've got to examine my medication. Gotta talk to my GP, gotta talk to my consultant. And no you just deal with it. Well I mean you know you should never just off bat just change your medication and you should certainly never do anything dramatic with it, like take it down by 50% or just knock off a whole load. Because that's a very risky thing to do. Especially when you're reducing it, increasing it is not as bad but you should still do that slowly. Decreasing it quickly is well - fit.

For a couple of people, none of the medications had helped control their seizures but their epilepsy was operable, so doctors had suggested having brain surgery.

Besides trying to find a suitable AED, the side effects of medication were another challenge most people struggled with. 

Last reviewed May 2016.

Last updated May 2016.

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