Epilepsy in Young People

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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Last reviewed May 2016.

Last updated March 2014.