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of everyone affected by epilepsy

 

Activities

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, sharp objects and some electrical equipment. 

Until you have seizure control, here are some of the things you could consider to keep yourself as safe as possible. There are more examples in our safety information.

  • Swim with a responsible adult
  • Tell a lifeguard about your epilepsy if you want to swim
  • Take someone with you 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 only when there’s someone else in the room

There are some things you may always need to be careful about. This includes having a bath or shower, because there is a risk of drowning if you have a seizure in the bath. A shower is safer than a bath. But even then, it isn’t a good idea to bathe when alone in the house. Ideally ask someone to wait outside the door, so they can hear if you have a seizure. And don’t lock the door.

Risk assessments and possible discrimination

If you want to take part in an activity that might carry some risk for you, you need a risk assessment. Contact the organisation running the activity 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. Unfortunately sometimes there will be risks that can’t be dealt with and it just won’t be possible to do the activity.

It’s important the risk assessment is about you and not just someone’s general understanding of epilepsy.

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 called 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. The type of work you are able to do depends on how your epilepsy affects your daily life, and what skills and experience you have. An employer would need to do a risk assessment for you and then consider any possible reasonable adjustments they could put in place.

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 and the Equality Act.

Alcohol and recreational drugs

Looking after yourself is not an easy task as a teenager. There’s 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.

Alcohol

Having epilepsy and taking epilepsy medicine doesn’t have to mean that you can’t drink alcohol. But there are some reasons why you might choose to limit how much alcohol you drink. You might even choose not to drink alcohol at all.

Drinking a lot can reduce the amount of some epilepsy medicines in your blood. This could make you more likely to have a seizure. Alcohol can also make the side-effects of some epilepsy medicines worse. For example, if your epilepsy medicine already makes you feel dizzy, this might get worse when you drink. 

Some people find that drinking alcohol when they take epilepsy medicine makes them feel drunk quicker.  So you might find that you feel drunk more quickly than your friends, even though you drink the same amount. This could leave you feeling out of control. You might slur your words, lose your balance and be sick.

Drinking a lot, or binge drinking, can cause you to have ‘withdrawal seizures’. These seizures may start between 6 and 48 hours after you’ve stopping drinking. 

For some people, drinking alcohol can mean they get less sleep or forget to take their epilepsy medicine. These are both things that can make you more likely to have a seizure.

Recreational drugs

You’re never going to know exactly what all the ingredients are in a recreational drug. This increases the risk of seizures because it’s not always possible to say how you may respond to different ingredients in the drugs.

Be aware of the risk of missing a dose of your epilepsy medicine, of missing meals and of not getting enough sleep.

Photosensitive epilepsy

Photosensitive epilepsy is where someone has seizures that are triggered by flashing or flickering lights, or patterns. Any type of seizure could be triggered but tonic-clonic seizures are the most common.

There are 2 groups of people who have photosensitive epilepsy:

  1. People who only have seizures triggered by flashing or flickering lights, or patterns. This is sometimes called pure photosensitivity
  2. People who have seizures triggered by flashing or flickering lights or patterns but also have seizures at other times

Flashing and flickering lights

Different people will be affected by lights at different flash or flicker rates. Lights that flash or flicker between 16 and 25 times a second are the most likely to trigger seizures. But some people are sensitive to rates as low as 3 or as high as 60 a second.

Patterns

Different people will be affected by different types of pattern. Those patterns with a high contrast or some that move are more likely to trigger seizures.

How common is photosensitive epilepsy?

Around 3 in every 100 people with epilepsy have photosensitive epilepsy. If someone else in your family has photosensitive epilepsy, you are more likely to have it too. And if someone in your family has juvenile myoclonic epilepsy, you are also at higher risk of having photosensitive epilepsy.

What is the treatment for photosensitive epilepsy?

The most common way to treat photosensitive epilepsy is with epilepsy medicines. This is to lower the risk of having a seizure. To reduce the risk further, try to avoid looking at things that you know can trigger a seizure.

If you find yourself coming across something that might trigger a seizure without warning:

  • Don’t close your eyes (this could cause a flicker effect
  • Do cover one eye with the palm of your hand straight away
  • Do turn away from the possible trigger

 Doing these things reduces the number of brain cells that could be stimulated and in that way the risk of a seizure happening is reduced.

We have more information about photosensitive epilepsy.

Transport and travel

Driving

Most people with epilepsy need to have been seizure free for 12 months to be able to apply for a provisional or full driving licence. But it does depend on what type of seizures you have and when you have them. 

Bus and train benefits

If you’re 17 or over and can’t apply for a driving licence because of your seizures you’re entitled to certain benefits. These are a free bus pass and a Disabled Person’s Railcard. Bear in mind that to get a Disabled Person’s Railcard based on having epilepsy alone you have to be taking epilepsy medicine.

Epilepsy Action has more information about benefits in the UK.

Bikes

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.

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact the Epilepsy Action Helpline on freephone 0808 800 5050.

Code: 
F118.03
Event Date: 
Thursday 26 November 2015 - 13:43

Epilepsy Action would like to thank epilepsy specialist nurses Neil Williamson at University Hospital Lewisham and Ruth McNulty at St Luke’s Hospital, Bradford for their contribution to this information. They have declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated June 2017
    To be reviewed June 2021

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