Epilepsy and safety: frequently asked questions
- Do I need to think about safety differently from other people?
- How could my seizures put me at risk?
- Which are the riskiest situations?
- Does everyone with epilepsy have the same level of risk?
- How do I decide if there is a risk?
- What do I do if someone else sees the level of risk differently?
- How do I do a safety check?
- I am a parent with epilepsy. How can I care for my young child as safely as possible?
- I keep having frequent bone fractures
Epilepsy can come with some risks to your safety. However, by putting some safety measures in place, you can lower this risk. There are many activities and situations that carry some sort of risk, even if you don’t have epilepsy. But people still do these activities – otherwise no-one would ever cross the road! Like anyone else, you might decide the benefits of doing a particular activity outweigh the activity’s risk.
If you have epilepsy, your seizures can put you at greater risk of accidents or injuries. During an epileptic seizure, you might fall down, lose consciousness, or have muscle movements that you can’t control. All of these can put you at risk of physical injuries such as:
- Burns and scalds
- Head injuries
- Sources of heat or power
Not everyone with epilepsy has the same level of risk. For example, someone who has seizure control may not be at any more risk than a person who doesn’t have epilepsy.
But someone who has lots of unpredictable tonic-clonic seizures may be more at risk.
The risk of accidents or injuries depends on:
- What happens during your seizure
- Where you are
- What you are doing
- Who you are with
As well as accidents or injuries, you can also be at risk of sudden unexpected death in epilepsy (SUDEP). Some people seem to be more at risk than others. Epilepsy Action has separate information about this, including ways those risks can be reduced.
A risk for one person with epilepsy may not be a risk for another person. Some people prefer to take some risks. Other people prefer to stay as safe as possible. You’ll need to find a balance between your quality of life and staying safe. And then you can make a choice that is right for you.
It is likely that different people will see risk differently. This is especially likely with members of your family. It is understandable if they feel anxious for you. But once you’re an adult, the choice between quality of life and safety has to be yours. It may help to let them know you’re aware of their anxiety. And it would be good to see if, together, you can find a way for them to feel less anxious. This might include agreeing to take a friend with you somewhere, or texting them every so often while you’re out, for example. See safety outside the house for more suggestions.
A safety check helps you decide whether something is safe for you personally. And if there are risks, it helps you work out what could be done to make that activity safe enough for you to do. It doesn’t need to be complicated. All you need to do is:
- Think about your seizures – what happens, how often they happen, specific triggers
- Keep a seizure diary or download an app to help get any information about patterns or triggers. Knowing about triggers and patterns can offer some useful information about how to make an activity safe for you
- Think about what the risks would be if you had a seizure
- Make a plan to do things that reduce those risks
Here are some questions to help with a safety check:
Epilepsy Action would like to thank Christine Hanson, Advanced Clinical Nurse Specialist in Epilepsy in Cardiff for her contribution to this information.
Christine Hanson has declared no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated November 2017To be reviewed October 2019