This brochure gives an overview of epilepsy, living with epilepsy and the support you can get from Epilepsy Action.
What is epilepsy?
Key facts
- Epilepsy is a condition that affects the brain, causing repeated seizures
- Anyone can have a one-off seizure, but it doesn’t always mean they have epilepsy
- People are usually only diagnosed with epilepsy if their doctor thinks there’s a high chance they could have more seizures
- Epilepsy can start at any age and there are many different types
- Some types last for a limited time, but for many people, epilepsy can be a life-long condition
Newly diagnosed?
If you’ve recently been diagnosed with epilepsy, visit our guide to help you think about your next steps and find out how we can support you.
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What are epileptic seizures?
Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.
There are many different types of seizure. What happens to someone during a seizure depends on which part of their brain is affected, and how far the seizure activity spreads.
During some types of seizure, the person may remain alert and aware of what’s going on around them, but have unusual sensations, feelings or movements. With other types, they may lose awareness and behave oddly, or go stiff, fall to the floor and jerk.
After someone has a seizure, it can take a while for their brain to fully recover and they may feel confused.
Read more about different types of epileptic seizures or take our short online course to see what different types of seizures look like and learn what to do when someone has one.
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How common is epilepsy?
Epilepsy is one of the most common serious neurological conditions in the world. It affects around 630,000 people in the UK.
This means that around 1 in 100 people in the UK have epilepsy. Around 80 people are diagnosed with epilepsy in the UK every day.
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What causes epilepsy?
Possible causes of epilepsy include:
- Brain damage, for example damage caused by a stroke, head injury or infection
- Brain tumours
- The way the brain developed in the womb
- Changes in a person’s genes
But in over one third of all people with epilepsy, doctors don’t know the cause.
Our genes tell our body how to develop and function. They are likely to play a part in who does and who doesn’t develop epilepsy. This may explain why some people develop epilepsy following, for example, a serious head injury while other people don’t.
Researchers have found a number of genes linked to particular types of epilepsy. There are many types that doctors think are likely to be genetic, but they don’t yet know which genes are involved.
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How is epilepsy diagnosed?
Epilepsy should be diagnosed by a specialist doctor with experience in diagnosing and treating epilepsy. For adults this is usually a neurologist (a doctor specialising in conditions that affect the brain or nerves).
For children, epilepsy is usually diagnosed by a paediatrician (a doctor who specialises in treating children) or in more complex cases, a children’s neurologist.
To help them make a diagnosis, an epilepsy specialist will take a full description of the person’s symptoms. They may also arrange for some tests to help give them more information about the possible type and cause of the epilepsy.
This can also help rule out any other conditions that could be causing seizures. These tests can include blood tests, an EEG (recording of the brainwaves) and a brain scan. Some people may also be referred for genetic testing to see if their epilepsy is linked to their genes.
Find out more about how epilepsy is diagnosed and the tests involved.
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How is epilepsy treated?
The main treatment for epilepsy is medicine. These are sometimes called anti-seizure medications (ASMs) or the older term anti-epileptic drugs (AEDs). The medicine doesn’t cure epilepsy, but helps to stop or reduce the number of seizures, or make them less severe.
Around half of all people with epilepsy find that their seizures stop with the first medicine they try. But some people need to try a few medicines before they find one that works well for them. And some people need to take 2 or more epilepsy medicines together.
Around a third of people with epilepsy have seizures that don’t stop with epilepsy medicine. If epilepsy medicine doesn’t work well for someone, their doctor might suggest other types of treatment. Other types of treatment include brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet.
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What is living with epilepsy like?
Epilepsy affects everyone in different ways. Watch our video to see Paul, Lauren, Patience, Harry, Rosie, Lucy and Helen talk about the impact epilepsy has on their lives.
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How can I help someone having a seizure?
Visit our first aid for seizures webpage.
Take our short online course to find out what to do when someone has a seizure.
How can I support someone with epilepsy?
Whether you are a parent, employer, carer or work in a school, we have lots of resources to help you support people with epilepsy.
Parents
If your child has epilepsy, our information and support for parents is for you. It includes advice on epilepsy in school, virtual support groups for parents and an online course.
Employers
If you’re an employer, visit our online employment toolkit to help you support people with epilepsy at work.
Carers
We have information about caring for someone with epilepsy and a learning disability.
For care and support staff, our online course Supporting and caring for people with epilepsy aims to give you the knowledge and skills you need to work effectively with people with the condition.
School staff
Find out more about our free online training for schools.
How can I get advice about my epilepsy?
The Epilepsy Action helpline is here to help.
Call now on 0808 800 5050 or click the link below to message them directly.
Download your guide to epilepsy
Download an introduction to epilepsy
Help us find more people like Andy
With your support we can provide support when people need it the most.
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