Alcohol, smoking, recreational drugs and epilepsy

Here young people talk about their experiences of and thoughts on drinking alcohol, smoking and taking recreational drugs. There are particular risks associated with drinking alcohol and taking recreational drugs for people with epilepsy and these are discussed further below.

Drinking alcohol

Young peoples’ experiences of drinking varied widely, from those who didn’t drink at all to those who drank regularly and said they didn’t want their epilepsy to restrict their fun and socialising. Most people we spoke with said that epilepsy or the medication they were on had influenced their drinking habits. Many said they could still drink alcohol but avoided getting completely drunk. They felt they knew their own safe limit and tried to keep to it. This way they said they could enjoy a drink but keep healthy and not let epilepsy ‘dictate’ their life too much.

If Charli drinks more than she should she feels like a seizure is coming on.

Age at interview 23

Gender Female

Age at diagnosis 18

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I do have to watch, be careful of my drinking ‘cos I find in the morning after, if I do go out and have a bit of a heavy night, in the morning I’ll feel weird. That’s my way of saying that I feel like a fit’s gonna come on. Sometimes like I said earlier it could be mind over matter where I’m anxious about it, if I know I’ve had a couple of drinks that night before, mind over matter kicks in sometimes and I think ‘oh I feel weird, I feel weird. I probably don’t, I’m just thinking it, I’m making myself feel weird. But yeah if I do go out and do have a bit more than I should have, I do sometimes feel a bit strange in the morning and so I tend not to do that. But all my friends like are aware of what goes on, and everything so, they know what to do if it happens.

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Alistair takes it slow with alcohol and sometimes just has soft drinks on a night out with mates.

Age at interview 18

Gender Male

Age at diagnosis 16

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The consultant said, and nurse, you can drink but you need to make sure that you know your limits. You see people on medication and having a drink at same time, it don’t go together. A couple of times I’ve, you know, had one too many to drink luckily it hasn’t bothered me. You know, at one point I did have a panic attack and people thought it was a seizure but luckily it was a panic attack and not a seizure. But I would recommend people to make sure that they know their limits. Because you don’t want to have too much drink and then, it can of course affect your medication. So my social life hasn’t really bothered me with going out with friends for a drink.

So you can go to the pub?

I just tend to, you know, take it slow. There’s no need. Sometimes I can go out and not have a drink. I don’t think you need to have a drink to go out, you can just enjoy yourself as much. People just think that it’s something that comes to mind, having a drink, but with me it don’t really bother me, I could go out and have a glass of coke at night and still enjoy the night. And social life otherwise has been okay.

Do you find ever difficult not to have a drink, do you feel like there is a bit of pressure?

I think there is a bit of pressure when you go out with your friends and they are stood around you and you can smell alcohol and you think oh I wish I could have one. So a few times I’ve had one but when they’ve started to have a few many, that’s when I look at it and think should I or shouldn’t I and I’ve actually stopped myself sometimes from having a drink. So it’s down to the individual. Do they want to have one more drink and affect them. Touch wood I’ve always thought on bright side and not had an extra drink.

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The safe limit of alcohol was different for different people and also varied at different times for the same person. The most important thing, people said, was that they felt they knew their safe limit and knew when to stop drinking. Some also pointed out that the type of alcohol they drank made a difference and that they felt they needed to stay clear of spirits.

Omar says he drinks responsibly and knows when he needs to stop and go to bed.

Age at interview 28

Gender Male

Age at diagnosis 15

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I can drink responsibly and like I can drink quite a lot. I can handle quite a lot of drink, and I’m not just saying that because like trying to be like macho or nothing, even though I’ve got like an army shirt on. But it hasn’t really, I haven’t stopped drinking right. I was out drinking yesterday I was fine. I had three pints and three whiskies, I was out drinking on Wednesday afternoon and I had two pints of lager and I was fine. And, you know, yeah I can last quite long.

So you’ve not noticed’?

No I just need to get to bed when I need to get to bed like.

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A couple of people had also noticed that the same amount of alcohol had more impact on them now than before they were on AEDs, so they drank less. One man was concerned about his medication being less effective because he felt that if he drank a lot of beer it would be ‘flushed out’ out of the body very quickly. The ways in which alcohol can affect seizures and AEDs are outlined below.

Some people had noticed a definite link between drinking alcohol and having seizures. For some, seizures were more likely to happen if they hadn’t been sleeping or eating well so they made sure they had enough rest and ate well if they were planning to go out and drink.

Kirsty likes to drink and enjoy herself but tries to keep to her safe limit, as she is likely to…

Age at interview 20

Gender Female

Age at diagnosis 19

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I can drink yeah, but I’ve got to put a limit on myself, like I can’t get absolutely up bladdered off my face, but I can have like a good drink and be okay.

How many could you have?

Um, okay for instance yesterday I had like six bottles of Reef, and I wasn’t drunk but I was like happy drunk and I was fine, that was yesterday. But I can’t really have much more than that, like I know when to stop because I know, ‘Oh stop you might have a fit or something’, but it does definitely affect you having a seizure.

What about the next day, if you’ve had a drink?

Yeah, that normally the next day I can, but then I think I’m not going to stop drinking you know if I have a seizure I get over it in twenty minutes. I want to drink I want to have a good time, I’m not going to stop drinking for the fact that I’m going to

have one seizure the next day, I’d rather have the seizure and have a good time to be honest. I don’t mind. It’s just a little seizure [laughs].

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Anna is likely to have seizures if she has alcohol and hasn’t slept or eaten well. She tries to…

Age at interview 20

Gender Female

Age at diagnosis 11

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Drinking alcohol can sort of increase the likelihood that I’m gonna have a seizure, so I try not to get really drunk. I don’t like feeling completely out of control, and if I make sure, because you don’t eat, and if you’re stressed and if you’re tired, and if you drink alcohol, they’re all kind of factors that make you worse. I try if I’m drinking make sure that I’ve got all the other things sort of secure. Because if I’m really tired, and I haven’t eaten and then have a drink, I’m really likely to have a seizure. So if I try and kind of organise it more, just make sure that I’m not making it really likely that I’ll have a seizure, then it’s not too bad.

Yeah, do you have a sort of safe limit when you drink, that you know that you are still okay in terms of having seizures?

Well if I’m feeling sort of tired or anything then I’ll probably have, I mean I think two drinks would probably be it. Just because I don’t think it’s awful if I do drink, but it’s just like kind of awareness that I don’t want to push my luck and have loads to drink and I just put myself at more risk from a seizure, but I’ve never kind of had to say I’m not going to have a drink, another drink because I might have a seizure. I’ve just kind of not had another one or had a soft drink instead, it’s not been sort of an issue socially.

And what about the day after if you’ve had a drink, does that make you have more seizures if you’ve got a hangover?

I think so, in the same kind of way, because you’re probably tired, and you’ve got alcohol in your system that it just kind of part of that, one of those, that, sorry I’ve seizured again now [laughs]. And it’s just kind of that same feeling of being tired and having alcohol in your system makes me more susceptible to them. But it just means that it’s something that I’ve got to be slightly more aware of. But it generally doesn’t stop me going out and having a drink, having a hangover in the morning upsettingly enough.

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A few hadn’t noticed an increased risk of having a seizure when they were drinking, but rather that seizures were more likely the next day if they had a hangover. One man said, because of his medication, he is sick easily when he has a hangover, even if he hasn’t drunk very much. It is then possible to throw up epilepsy tablets and not get their full effect, which can be risky.

Some people were annoyed that they had to cut down their drinking, or not drink at all, because it made them more likely to have seizures or because alcohol didn’t agree with their medication. A couple of people felt that not being able to drink had a negative impact on their social life, especially at university. A few people had felt peer-pressure to drink alcohol, especially when they were younger, and some had lost friends after they were diagnosed and trying to live a more regular lifestyle. One woman said’

‘I do sort of get annoyed sometimes when all my friends are lagging out like nuts, and I can’t get drunk like that. I can’t, it’s not good for me to drink that much. So I would like to get drunk [laughs] like absolutely paralytic, like a couple of times but I just can’t and it’s not worth it, for my health reasons it ain’t worth it.’

A couple of people said they did sometimes binge-drink, and though they said it’s not a great idea, or that it can be potentially dangerous, they didn’t want to compromise on that because of epilepsy. One woman said she still drinks a lot, against her doctor’s advice. A couple of people felt that because they were given ‘too many restrictions’ when diagnosed and because frequent seizures disrupted their lives, they had missed out on experimenting with alcohol in their teens. They said they were making up for it now, when they were a bit older.

Finlay didn’t drink alcohol when he was younger and found it really hard when his friends went…

Age at interview 21

Gender Male

Age at diagnosis 11

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I feel that at university especially, it’s such a big part of your life. Especially in a small town where there are no art galleries, there are no museums, there’s not a cinema that’s within walking distance, I don’t drive a car obviously, so it’s just like within walking distance of where I live, there’s pubs, that’s about it, pubs or restaurants. I mean you can choose not to drink, but I find that from experience, from growing up I found it so hard, it’s one of the hardest parts of it was that I just didn’t feel connected to my friends and I used to, they stopped inviting me out, they’d go. When you’re 16, 15 that kind of age you go out and you get drunk especially in Scotland, that’s what people do when you’re at that age at school and they go out to get drunk. I’m not going out to get drunk, I’m just standing in a playing field, that’s raining, and it’s just horrible, and so I just stopped getting invited out and I lost friends through it. And I do think that was one of the biggest casualties of me having epilepsy was loosing friends because of the decisions that I had.

So, but you’re happy with the personal choice you’ve made?

I am yeah. I think that I need to review it. Every time I wake up and I’m sick I think this maybe isn’t the right thing to do, and I have cut back on drinking. But I think for the moment for me it’s one of the biggest issues because I feel that it’s such a part of it. I know there are people who don’t have epilepsy who don’t drink, but all my friends drink, and I don’t have the stamina to stay awake at two in the morning drinking orange juice. And they’re all being really stupid and I don’t feel connected and it’s that connection that I missed when I was growing up and without that connection that I lost the friends. I think I lost the kind of the bonding when you go out and have a drink together and that is a shame that I missed that and I know that doctors disagree and that’s fine, but it’s just my personal experience and I feel that I missed so much of my kind of my growing up time, my like experimentation time that I missed out on a lot and maybe now is the time that I’m experimenting.

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A few young people didn’t drink any alcohol at all. Some thought they couldn’t drink any alcohol while they were on epilepsy medication. A couple didn’t like drinking anyway and a few had stopped drinking for a time after the diagnosis until everything had calmed down. On the whole, these people felt that drinking alcohol was not worth the risk of having a seizure. One woman said that if she has any alcohol she’s ‘guaranteed’ to have a nocturnal seizure in her sleep and she wanted to avoid that.

Morven hardly drinks at all because if she does, she will have a seizure at night.

Age at interview 21

Gender Female

Age at diagnosis 8

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Well I did drink alcohol until they put me on Keppra (levetiracetam), that’s one of the medications that I’ve been put on, and it was fine. I could maybe have maybe a couple of glasses of white wine soda or something, but now I can’t even have half a glass of that, it just gives me a seizure during the night. I mean it’s okay if it’s maybe round about lunch that I’ve had it, but any later than 2 oclock, then I could quite easily have a bad seizure, so I just have to try and keep myself off the alcohol now. Which is a shame ‘cos I really liked the white wine soda when I was at the pub. It was a nice treat now and again.

Yes yeah. Does it bother you that you can’t drink at the moment or’?

Not really ‘cos I’m not a person that loves alcohol you know I’m not an alcoholic or anything, so, I can keep myself off that and just stick to plain fruit juice or something like that.

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Alcohol can make seizures more likely to occur and too much alcohol is known to trigger seizures. Alcohol can worsen the side effects of AEDs and AEDs can also make alcohol more intoxicating. When under the influence of alcohol or recreational drugs, some people forget to take their regular epilepsy medication which can disrupt their seizure control. Alcohol can also disturb sleep and so provoke seizures. Seizures can often occur during the hangover period. Alcohol use can also result in potentially serious injuries and could possibly lead to status epilepticus. Excessive drinking can also be a risk factor for SUDEP (Sudden Unexpected Death in Epilepsy). How alcohol affects AEDs depends on the individual, the type of epilepsy, which AED they take and how much alcohol they have had.

Smoking cigarettes

A few young people we spoke with had found that stopping smoking had made them feel better and have fewer seizures. One woman said’

‘I used to smoke as well before and I think that could have, with drink, triggered fits, and I’ve stopped smoking. And that’s helping as well.’

Another woman said she also stopped smoking because it could be dangerous if she had a seizure while smoking. There is a risk of burns and fires if someone has a seizure when smoking.

Recreational drugs

Taking recreational drugs has particular risks for people with epilepsy. Amphetamines, ecstasy, cocaine and heroin have all been shown to increase the frequency of seizures in people with epilepsy. The use of cannabis is also best avoided. For some people, using recreational drugs can trigger epilepsy. They can also be a risk factor for SUDEP (Sudden Unexpected Death in Epilepsy).

We spoke to a few people who had used recreational drugs, either for a short time or for some years. They had used drugs mainly with their friends or in raves and house parties. Some said they had just been ‘experimenting’ but for a couple it had been hard and taken a long time to kick the habit. Because recreational drug use is illegal, all the people’s names below have been changed.

Al used to take a lot of drugs and has now been trying to go straight because it was ‘messing him…

Age at interview 24

Gender Male

Age at diagnosis 17

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A lot of us [friends] have grown up and moved on. See I’m a bit of junkie really, and just kinda come out in terms of that I’ve been a junkie and trying to go straight. It’s kinda like part of it.

Yeah. Do you think that’s a battle in a way for you at the moment?

Cigarettes it’s hard, not smoking, ‘cos you see them everywhere. It’s okay just to like I can go without cannabis and pills and everything, in fact I’m fine with that. I only ever did sort of amphetamines and ketamine and cocaine like a few times and I’d never really, latched on to them, never really found them that exciting. Ecstasy was something that you could latch on and I did quite a lot of that. I used to go through times when I was working I’d do like five one day and then four the other day, down three the other day, two the other day and one the other day, but backwards. Like if you take a week off from work and you go like Monday, Tuesday, Wednesday, Thursday, Friday, just doing like, fifteen. ‘Cos you could get like about ten for two pounds each. They were quite available. I just realised that it was just messing me up and I read about it, and I had a book and I read about it. It’s very good. I can’t remember who the author was but it was called ‘Ecstasy Reconsidered’ it’s quite good.

Have you received support in that sense?

No, in terms of drugs? No I never sought it, never sought it and told my GP about it what and when I was doing it but I didn’t tell them like how much I was doing.

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People had experienced increased seizures related to drug taking. One man said taking certain recreational drugs made him more prone to seizures, especially because he then forgot to take his epilepsy medication regularly. Another said that taking drugs ‘guaranteed’ him having a seizure during the come down the following day.

Matt took drugs because he was ‘in denial and wanted to be ‘one of the lads. He was ‘guaranteed…

Age at interview 24

Gender Male

Age at diagnosis 15

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I went through a stage of denial, went through of the stage of being as most teenagers are, rebellious. I also went through a drug stage. The drug stage was, it started off with just smoking a bit of cannabis which then moved on to MDMA, Ecstasy, as some people call it. Then from then it was a case of it was a frequent thing, not only a frequent thing because I wanted to do it, a frequent thing because my friends were doing it and I wanted to prove that I could do the same thing. I could shove chemicals in my body and still be all good. I’ve pretty much have done in my lifetime have done every single drug apart from heroin and crack cocaine. Not only just proving to myself that I could do it, but proving to my friends that I could do it, you know, I could still be one of the lads,. There were stages, certain stages where it became really serious, and it was a big issue but at the end of the day not only did I have to figure that out for myself, but I wanted to experience it. Because one thing I noticed was that my parents weren’t as clued up about it as would be necessary.

After a while it did get serious and I was doing it a lot, but then once I realised myself, that it was not only a bad thing, but it was a bad thing especially for me. For example the next morning, you know, there was gonna be a definite risk of me having a seizure. The state I was in, the sort of come down period if you like, took a while but I realised it, it just, it’s not good’It was always a risk.

I never had a seizure when I was on any of them; it was always the next morning, the come down, especially with ecstasy. When I was doing ecstasy pills, the next morning you could almost guarantee it. That’s when, in a way I thought to myself, yeah whatever, you know I’m gonna have it in the morning, okay I’ll do what I do in the night, I’ve never had one when I was on it. I woke up in the morning, give it half hour, sit in bed, have my fit, wake up, carry on, the next thing the next night. So, after I looked back on that and thought that is actually quite a serious issue, I got a bit more mature about in myself. It did affect me, it affected the seizures and it affected me.

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A couple of people felt that drug use in their teens had contributed to them developing epilepsy and one woman had been told this by her doctor. One woman worried that her past drug use could affect her when she is older.

Beth used to take ecstasy, cocaine and speed when she was younger and was told it may have…

Age at interview 22

Gender Female

Age at diagnosis 19

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Yeah well, when I was younger, when I was about fifteen, sixteen me and my friends we used to go to big raves, illegal raves, legal raves, any rave we could get into [laughs]. Being so young we used to go and part of these raves were the drug culture. And we used to do pills, Ecstasy pills, any pills, MDMNA, MDMA powder, Cocaine, Speed, and we used to puff as well. So the doctors reckoned that was the trigger for my epilepsy and I have no doubt that it was the pills and the amphetamine type drugs, stimulant drugs. I know I’ve done research in them in the past and found that they can mess your brain activity and stuff like that. So that’s what I used to it’s a bit naughty, when I was younger.

But I don’t do nothing like that any more I’m too scared to and I try and warn all my friends off them that do that stuff as well because it’s definitely, definitely a trigger, I’m almost positive on that. But yeah it was, it was scary I just used to be a bit of a rebel and do silly things. I feel like a div, I feel like, I wish I’d never been so stupid. But I’ve learnt my lesson and hopefully other people will learn by mine as well, do you know what I mean? So hopefully some good will come out of this.

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Some young people had tried cannabis and felt it made them calm down and feel more relaxed. One woman was worried about the possible effects of passive smoking of cannabis at clubs or parties. People with epilepsy are warned against smoking cannabis. Whether cannabis reduces or increases the risk of having seizures is not clear and different types of cannabis can also differ in their effect. Cannabis could also contribute to memory problems so that people forget to take their regular epilepsy medication, reducing seizure control. It is also possible, as with alcohol, that withdrawal after cannabis use triggers seizures.

Alison has read that cannabis can make you feel more relaxed but she’s worried because she smoked…

Age at interview 23

Gender Female

Age at diagnosis 20

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I don’t know whether this is true but I can see the meaning behind it, it was literally saying like cannabis can help with epilepsy and it’s mainly due to the you know, it sort of like chilling you out quite a lot, making you a lot laidback. So sort of stress is one of the triggers, it can sort of like help that. So I kind of [laughs] took that onboard and decided that maybe. I didn’t become a complete pothead [laughs] but I just decided like if I’ve had a severely stressful day at work it might be a good idea to come home, chill out a little bit maybe just have a small joint and just see how it go. I mean I don’t know whether it’s because I was controlled enough but I never had any problems taking cannabis and also as well with epilepsy.

But I do remember, there is sort of like that back in my mind it’s like when I was taking, there is an episode where I did take a bit too much and I did pass out. Now that could have been a fit but I don’t know it was a long time ago. So that has been in the back of my mind and sort of like thinking oh so therefore I’m totally against like taking’ I would never, never try anything but cannabis. I just think it’s worth when you’ve got something like this to try and take care of your body and sort of like make sure that you don’t bring on a seizure ‘cos that’s the main thing you wanna stay controlled.

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A couple of people said that their parents had had no idea of their drug use, or at least the extent of it. A couple of people said that they hadn’t told their GPs or doctors the full extent of their drug use because they didn’t want them to know.

Most people we spoke with knew that using recreational drugs is risky but very few had been given information about this from their doctors. Many felt that it was really important to get the information from health professionals rather than people finding information from other, perhaps unreliable, sources. One man said:

‘There is so little information, and I think that one of the biggest problems for me personally is that doctors and people in the industry, they refuse to accept the fact that people take drugs on epileptic medication, and if they don’t address that then people are always gonna try it anyway without having any information.’

Some people worried about the effects that recreational drugs could have on their brain as epilepsy is a neurological condition which affects the brain. Most people felt that they would never even try recreational drugs because they didn’t want to take a risk;

‘If alcohol can trigger a seizure, what’s cocaine gonna do? If a couple of drinks is gonna bring on a seizure, I just think it’s ridiculous, absolutely ridiculous.’

Another woman joked that her seizures make her hallucinate anyway, without her taking any recreational drugs.

Becky says she can’t think of anything more stupid for someone with epilepsy to do than take drugs.

Age at interview 23

Gender Female

Age at diagnosis 15

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I’ve never taken anything along like the lines of like hard drugs or anything like that. But a lot of my friends, well I’d say a lot of my friends, practically all of my friends take things like Coke, cocaine, a lot of speed, pills, things like that. I’ve never felt under any pressure to do anything because I’m the type of person, I’m not one of those people that bows to pressure anyway. I just always think that it’s never really appealed to me, because I’ve always just found it far more amusing to sit back and be the sober person watching everybody else. And secondly if you’ve got a condition like epilepsy, the majority of the time, half of these people I mean they don’t know what they’re taking anyway. I mean you see so many stories where people don’t know whether they’re taking, I dunno, soap powder or you know the actual drug that they’ve bought, or anything. They don’t even know what they are taking, so if they don’t know what they’re taking, how are we gonna know how it’s gonna react with our anti-epileptic drugs or how it’s gonna affect our epilepsy at all. So I just think that with a condition like epilepsy I can’t think of anything more stupid to do than a drug like speed or ecstasy or cocaine. I just can’t think of anything more stupid to do.

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