- Will there be things I can’t do?
- Risk assessments
- Discrimination and the Equality Act
- Alcohol and recreational drugs
- Photosensitive epilepsy
- Transport and travel
Will there be things I can’t do?
Yes there will be some things you can’t do, at least until your seizures are well controlled. For example, you’ll need to be careful with water, heights and sharp or some electrical equipment.
Until you have seizure control, here are some things you could consider to keep yourself as safe as possible:
- Tell a life guard about your epilepsy if you want to swim
- Take a friend if you want to go for a walk near open water
- Cycle on quieter cycle paths rather than busy roads. And always wear a helmet
- Use the cooker/ iron/ heated hair tools when there is someone else in the room
There are some things you may always need to be careful about. This would include having a bath in the house alone. As seizures are often unpredictable, it’s often safer to shower if you’re in the house alone. And even then make sure not to lock the door.
If you want to take part in an activity that might carry some risk for you, you need a risk assessment.
Contact the organisation to get the risk assessment done before turning up for the activity. Then you can be clear about what your choices are. And the organisation can get things in place if necessary, to make things safer for you.
Here are some useful questions to help work out if there is a risk for you.
- What type(s) of seizure do you have?
- What sorts of things can trigger your seizures?
- How often do you have seizures?
- How long do your seizures usually last?
- What usually happens when you have a seizure?
- How long does it usually take you to recover from a seizure?
- What time of day do you usually have seizures?
- Do you get a warning (also known as an ‘aura’) before you have a seizure?
- Are there any areas of the activity that could be dangerous, if you had a seizure?
- Is there any part of the activity that you are concerned about?
These questions are also relevant for work. Full information about work.
Discrimination and the Equality Act
It is important the assessment is about you and not someone’s general understanding of epilepsy. If there is a risk, then you and whoever is providing the activity, need to see if there is a reasonable adjustment that can be made so that the activity will be safe for you. It’s a requirement under the Equality Act for the person providing the activity to do a risk assessment. But the law only says they have to consider adjustments rather than actually carry them out.
If you think the organiser is treating you unfairly, for example not looking at possible reasonable adjustments, then you might want to look at our information on disability discrimination.
Find out more about epilepsy and disability discrimination
Alcohol and recreational drugs
Looking after yourself is not an easy task as a teenager. There is all sorts of peer pressure to do things that could be harmful for you. In the end it’s up to you what you do. But it’s important for you to have the facts so that your choices are based on sound information.
Having epilepsy and taking anti-epileptic drugs (AEDs) doesn’t have to mean that you can’t drink alcohol. But there are good reasons why you might choose to limit how much alcohol you drink. You might even choose not to drink alcohol at all.
Alcohol can make the side-effects of some AEDs worse. If your AEDs already make you feel sleepy, dizzy or light-headed, alcohol can make this worse.
Taking AEDs can also make you get drunk much quicker than your friends, even though you drink the same amount. This can leave you feeling out of control. You might slur your words, lose your balance and vomit.
Drinking a lot, or binge drinking, can cause you to have ‘withdrawal seizures’. These seizures may start between 7-72 hours after you’ve stopping drinking.
Drinking alcohol can mean you forget to do things like taking your AEDs. It can also lead to missing meals and not getting a good night’s sleep. All of these things will mean you’re far more likely to have a seizure.
Most people with epilepsy can have a couple of drinks without it triggering a seizure. But everyone is different, and some people find even a small amount of alcohol is a problem.
Almost everything we have said about alcohol is also true for drugs. Be aware of the risk of missing a dose of your AEDs, of missing meals and of not getting enough sleep.
You’re never going to know exactly what all the ingredients are in a recreational drug. So this also increases the risk of you having seizures if you take them.
Around three in 100 people with epilepsy have seizures which are triggered by flashing or flickering lights, or some patterns. This is called photosensitive epilepsy.
The seizure(s) will usually happen at the time of, or soon after, looking at the trigger.
We have more information about photosensitive epilepsy.
Transport and travel
Most people with epilepsy need to have been seizure-free for 12 months to be able to apply for your provisional or full driving licence. But it does depend on what type of seizures you have and when you have them.
Find out more about epilepsy and driving
Bus and train benefits
If you’re 17 or over and can’t apply for a driving licence because of your epilepsy you’re entitled to certain benefits. These are a free bus pass and a Disabled Person’s Railcard. Bear in mind that you have to be taking anti-epileptic drugs to get a Disabled Person’s Railcard.
Find out more about benefits in the UK, including free prescriptions.
It’s best for everyone who rides a bike to wear a helmet. If you have epilepsy that’s even more important. If you haven’t got seizure control, then it’s safest not to cycle on busy roads or beside rivers or canals
Epilepsy Action would like to thank epilepsy specialist nurses Roz Atkinson, Janine Winterbottom and Carmel McGinn of Cardiff, Liverpool and County Fermanagh for their valuable contributions to this information.
This information has been produced under the terms of The Information Standard.
- Updated December 2014To be reviewed December 2017