Epilepsy in Young People
Side effects of epilepsy medication
All medicines, including anti-epileptic drugs (AEDs), can cause side effects. These vary from person to person, depending on the AED, the dose and how people react to different tablets. Sometimes side effects happen when the drug is taken for the first time or when the dose is increased, this type of side effect often stops after a while. If a person gets side effects from increasing the dose, a more gradual increase can help. Some people may get no side effects at all. It is important to remember that:
- No one should stop taking an AED without talking to their doctor first because stopping AEDs suddenly can cause seizures.
- No one should take extra doses of an AED unless their doctor suggests this because this can make side effects worse.
Nearly all the young people we spoke with had experienced some side effects from the various epilepsy medications they'd used. For some, the side effects were minimal and didn't interfere with daily life. For others, the side effects had a big impact on school and work, psychological and mental wellbeing, ability to exercise and so on. Only a couple of people said that they hadn't had any side effects at all.
The side effects included physical, psychological, cognitive (how the brain processes information from the senses) and behavioural problems.
The side effects Kirsty has had include memory problems, feeling emotional and problems with her...
feel really tired, just when I've taken one like an hour after I've taken one you are just tired, really tired of them.
They [medication] definitely make me more emotional. Like before I was taking them I used to just like be fine, I wouldn't cry about anything, but now if a movie comes on I cry over slushy movies and stuff, and I never used to do that. They do make me a cry a lot easier, I'll just cry about anything now. Stupid things which I never used to [laughs].
You said about the memory loss, can you tell me a bit more how that affects your daily life?
Really badly, like if someone's says, like that I forget my medication, that's one of them, it makes me forget. If someone says can you do this for me, I'll say yeah, yeah, yeah, but then I'll say oh text me five minutes before to remind me because I'll forget, and I do. They'll text me and I'll just go oh yeah, I forgot I had to do that. I just forget everything. It's quite bad [laughs].
And do people realise that it is because of the treatment?
I'll say to them yeah. They'll say like, "Ah you're late" or something or, "You didn't", "You forgot to get this for me," I was like, "Yes sorry, medication again." They're like, "Ah it's okay." They're cool, they deal with it.
And how do you feel about that? The memory loss and the balance, and the crying'?
It does annoy me sometimes because it feels like I can't control my emotions and my mind, and its just like aah, really frustrating. You can't do these things, but, you just have to deal with it. There's nothing else you can do but deal with it.
Physical side effects
The most common side effect that young people had was tiredness. They said different medications had made them feel 'drowsy', 'dopey', 'groggy' and 'sleepy'. People described generally 'lacking in energy' and 'fatigued' and one young woman felt so tired she could sleep 'for the better part of the day'. For most, constantly feeling tired had a considerable impact on their school work. Some medications in a' slow release' formulation can help reduce side effects.
Bex describes the side effects of three different tablets she has been on, including tiredness,...
So what were the side effects like? You said they were awful?
For Keppra I was like sick, quite dizzy, but I was sleeping, you know I couldn't get up in the mornings which was awkward with Uni. All my lectures were in the morning and I was missing a lot of time. You often get drowsiness with medication so I knew that it wasn't a problem, but then my body didn't seem to like the drugs so I was taken into hospital. And I just was sick, I was dizzy. It was like getting the flu but you know I was always tired, I was sleeping a lot, and I was just always tired. And it was very, very difficult. I didn't really know what I could do to improve it.
Martyn didn't benefit as much as he could have from the amount of sport he was doing and feels...
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.
Another physical side effect people experienced with some AEDs was skin problems. These included rash, dry skin and acne on the face and chest.
Because of her medication, Ashlea gets spots on her chest. Her doctor also thought her medication...
One young man had bad acne and boils on his face because of the AEDs. He'd been bullied because of this, and it had knocked his self-esteem and confidence.
Some people had problems either losing or gaining weight because of AEDs. A few said their appetite increased - one woman said she was 'constantly looking in the cupboards thinking “What can I eat next?”'. Another had lost her appetite whilst being on a particular AED. One man lost weight so rapidly after starting a new medicine that he had to quickly be taken off it.
For a few people, their medicine caused loss of balance and dizziness. Some had temporary double vision which could be a really scary experience. One man had permanent double vision, which is very unusual, and said' “I'm rubbish. I can't play darts.”
Other physical side effects people described included headaches, feeling sick and unwell, lowered level of immunity (resistance to viruses), slurred speech, loss of bladder control and loss of sex drive. A few people also had sleep problems and insomnia.
Psychological side effects
Epilepsy medication also caused psychological side effects for some young people. A few, who had depression, linked it to the AEDs they were taking (see 'Anxiety and depression'). Some people also experienced mood swings and a few had anxiety problems.
Ben had a bad reaction to one AED, which caused insomnia and made him feel edgy and anxious....
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.
A couple of men had had feelings of paranoia as a side effect of their AEDs. Another said he lost his confidence after he was put on epilepsy medication.
Cognitive side effects
Memory problems were one of the main side effects that people talked about. The extent to which their memory was affected varied - from difficulties remembering phone numbers or revising for exams to severe memory loss over long periods of time.
Holly describes the cognitive problems she had. She couldn't remember letters of the alphabet but...
Memory problems have affected Helen's exam results and job. She has managed to turn her poor...
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.
People had struggled to remember appointments they'd made, people's birthdays, knowing whether they'd paid their bills, the names of songs, bands or actors, and so on.
Jason sometimes forgets things. Forgetting his key worker's name really upset him.
Some people said it was difficult to know whether it was the medication that affected their memory or the epilepsy itself.
Zoe is very concerned about her long-term memory and says she has no memory of her childhood. She...
Do you feel that describes your life that you are 'living without a past'?
Quite, yes. Yes. I can't put a finger on it.
Is that from the time that the seizures started or does it extend already beyond that when you were smaller?
I have no childhood.
Other cognitive side effects that young people had experienced included problems with concentration and shortened attention span. This, again, caused extra pressures at school, university and work.
Several people said they generally felt 'duller' and slower in their thinking and behaviour. One young man described feeling like a 'zombie' and another said he sometimes felt he wasn't quite 'with it'.
Medication makes Finlay often feel 'doped' and 'more slow and less creative' than before. When he...
And, I go, 'Ah, well it means I'm must take my medication', and that's when I realise that I just think, 'God, what could my life be like, how would I feel, what would my personality be like, if I wasn't so heavily reliant on Tegretol.' I'd like to come off it slowly but it's, I know that it's a part of medication and I'd just like to understand how it affects me and even the doctors have said we don't really know why you have epilepsy, we can only give you the drugs that stop the symptoms of it really. I have to go with the doctor's best opinion but again I was so scared of the kind of the results of what happens with epilepsy and everything and I just followed doctors orders. I didn't complain when I was feeling doped all day, I would never complain I would just be like, 'Nope, that's part of what having epilepsy is about, you feel doped.' And now, I feel a little bit more like well, I'm doing things now that are against the doctor's advice and so it makes me question more what can I really get away with? And if I wanna have a good time and I feel like I've had a good week on medication prior to it, and I'm like right I'll go out all night tonight and have a great time, I'll take maybe half the medication that I'm meant to take, or I'll skip a night's medication and that is very very much frowned upon, and I know it is. I know it's bad for me, but I go out and I just feel like I'm free I feel like the chains come off my back and I can run around and just be my old self before epilepsy, and it's fantastic and I love it. Next morning I always make sure I take my medication early and I know that if I told the doctors, they'd say you have to stop, and that's fair enough but, I've tried a few times now, and I feel that I can control it. If I had a seizure then I'd stop because I really have had so many seizures over the years that I really have no fear anymore.
Zoe felt the medication dulled all her senses, like 'living in a cloud'. She also lost her...
Yeah, you said the side effects from Keppra were very very severe. Can you tell me a bit more about those?
Oh, again, very cloudy because I was in the middle of a cloud. I can almost, I've taken myself back to that time, I can almost see myself not being able to see. It was like a morphemic state, it is but not, not nice at all [laugh]. For God's sake no, it felt supremely suppressive yes, in a negative way. I felt weighed upon by this, all of my senses would diminish of course my sight, I had no interest in food, I don't remember eating at all. It felt as though I had no function over my physical body, my mobile limbs, I think yes my legs were so weak, that I'd collapse if I didn't have some sort of support. And I was sleeping, sleeping for the better part of the day. And I say, no I can't continue with this. That's as far as I can remember.
A few people said they felt like completely different people after they had been taking AEDs. One young man said his friends had commented that he seemed less active and energetic than he'd been in the past.
Behavioural side effects
A few young people had also experienced behavioural problems as a side effect of their medication. This included verbally or physically aggressive behaviour and a 'bad temper'.
Alistair felt aggressive and had a 'short fuse' when he started his medication. He went to anger...
Yeah. Can you tell me more about the aggression that you experienced with Tegretol, what was that like?
Yeah, the school was getting worried because me temper was getting very bad. But after sitting down, and letters being wrote to the school by the GP, saying that after new research the side-effects for the medication can be aggression. At school it did bother me, because people found out that I were epileptic and they were winding me up when I wasn't able to like let it go past me. And it did cause a few troubles. But school were aware of that and the appropriate people were informed in case anything did happen. Otherwise I'm on new set of medication, on lamotrogine it doesn't bother me.
So would you sort of get into fights with people or be easily irritable?
A few times if anyone had touched me or anything it would wind me up very easily, or at school called it a short fuse. That's what they said I had. But no, times have gone on and I've got over that. It's a matter of being mature as well. But school thought 'oh he could be bit immature', but then after realising it was medication problem then that's what they put it down to.
Yes. And how was the school in supporting you with having epilepsy?
They set up an anger management class. I had to do anger management with a special teacher what was able to sit down for an hour or two every week. We used to sit down and talk about things. We did a diary of what I was eating on a daily basis. The school thought it could be something that I'm eating at school. Or see what lessons, see if there was chain line. If it was certain lessons that were causing seizures, stress at school that was another big thing. If I were going through quite a bit of stress with teachers and lessons and subjects, I was worried about me exams but I was all right. But going to anger management through school was pretty helpful. And if I require that now I've been told I can contact the epilepsy nurse, she can organise classes for me whenever.
A couple of people who said they were usually very calm noted that one side effect of their AEDs was irritability and feeling 'obsessive', which caused problems in their close relationships.
Extreme reactions to medications
Very occasionally, a person may get severe side effects. Some people we spoke with had had an extreme reaction to a new AED or a change of medicine. These were very rare events and were mostly to do with changes in the dosage.
Holly says she had 'the world's worst drug change' when she was simultaneously on high doses of...
They decided that they couldn't just take me off the carbamazepine and just leave me on the Keppra (levetiracetam) that was too dangerous. So they had to build up the clobasam while I was still on the carbamazepine and the Keppra, so I had three drugs all at quite high doses, all with you know interactions and different side effects. I was just incredibly unwell, I mean, there's just no other way of putting it and I like I knew that I wasn't going to be able to work pretty early on so I suspended. Because you know the length it takes you to do your PhD is quite important isn't it, so I suspended so the clock stopped on that and I didn't have to worry about that anymore. I was living at home because of this because I knew this was going to be happening and everything. So I had that kind of support and people to look after Elvis [seizure alert dog], because if I'm completely incapacitated that's a problem. I pretty much slept for two months I'd say, and I just couldn't do anything, I hardly even remember those two months, I really don't remember them at all, Elvis hardly left my side, and he had to be dragged out on walks, he didn't want to go.
I was just vomiting the whole time and then that was really dangerous because then I wasn't keeping all my medications down so, doctors were having to come out all the time and stick injections in my arse which was really embarrassing and they kept saying that maybe I should go into hospital but I really didn't want to do that, 'cos I wanted to be with Elvis.
'Then the weirdest thing started happening like I started getting better, and I got better, and I got better and better, until I realised that I'd got too much better and I was actually completely manic and I couldn't stop. So I'd gone from being completely, semi comatosed, to not being able to sit still, not being able to slow my brain down, kind of thinking about things all the time. I decorated two of my parents' rooms, I painted like virtually the outside of the building, apart from the bits up ladders obviously. I completely did their garden, I just was like a whirling dervish and I couldn't stop but then that was really dangerous, because I did stop because I would have warnings and I would have to stop. And they were actually more frequent, but that did settle down eventually, because as they increased the clobazam even more I just went back to being knackered all the time.
Martyn started a new AED but hadn't realised he should be reducing the old one at the same time....
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.
People who suffered considerably with side effects felt that juggling the medication and living with the different side effects was a bigger problem than the epilepsy itself! For some, the side effects eased when the dose was lowered; others were taken off particular medication and put on something else.
Last reviewed May 2016.
Last updated May 2016.