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of everyone affected by epilepsy

What is epilepsy?

Epilepsy is a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures.

Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. Epilepsy is usually only diagnosed if someone has had more than one seizure, and doctors think it is likely they could have more.

Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.

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. During some types of seizure the person may remain alert and aware of what’s going on around them, and with other types they may lose awareness. They may have unusual sensations, feelings or movements. Or they may go stiff, fall to the floor and jerk.

Read more about different types of epileptic seizures or take our quick e-learning module to see what different types of seizures look like and learn what to do when someone has one.

How common is epilepsy?

Epilepsy is the one of the most common serious neurological conditions in the world. It affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy. Around 87 people are diagnosed with epilepsy in the UK every day.

What causes epilepsy?

Sometimes, doctors can find a clear cause for a person’s epilepsy. Possible causes of epilepsy include:

  • Stroke
  • A brain infection, such as meningitis
  • Severe head injury
  • Problems during birth which caused the baby to get less oxygen

But in over half of all people with epilepsy, doctors don’t know what caused it. Some may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.

Find out more about epilepsy and inheritance.

How is epilepsy diagnosed?

The main way doctors diagnose epilepsy is by taking a detailed description of the seizures. 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 brain scans. But there isn’t a single test that can prove if someone does or does not have epilepsy.  

Find out more about how epilepsy is diagnosed and the tests involved.

How is epilepsy treated?

The main treatment for epilepsy is epilepsy medicines. These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy, but helps to stop or reduce the number of seizures.

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 which is sometimes used for children.

Find out more about epilepsy treatment.

How can I help someone having a seizure?

Visit our first aid for seizures webpage.

Take our quick e-learning module to find out what to do when someone has a seizure.

What is living with epilepsy like?

Epilepsy affects everyone in different ways. Watch our videos of people sharing their experiences of living with epilepsy.

Further information

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

Code: 
F092.03

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

  • Updated May 2016
    To be reviewed May 2019

Comments: read the 14 comments or add yours

Comments

I had epilepsy (I think it was photosensitive) as a child, I don't remember my seizures, but I do know I would have quite severe seizures that lasted around 10/15 mins. However, I grew out of it and my last seizure was when I was 3 years old, but I'm always worried it could come back. Is there a possibility that could happen? I'm 24 and I am still quite sensitive to flashing lights (they give me a headache, worse when I'm tired). Thank you

Submitted by Maariyah on

Hi Maariyah

There is a very strong possibility that you have grown out of your epilepsy, especially as you were so young when you had the last seizure.

Many people who have grown out of their epilepsy have a worry that stays in the back of their mind about seizures coming back.

No one can ever guarantee that a person will never have a seizure in the future, but it is certainly worth trying not to worry about this.

Cherry
Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

my daughter has had a seizure, she is eighteen, she has never had anything like it before, how worried should we be

Submitted by carol williams on

Hello Carol

Thanks for your comment. I hope your daughter is doing well. Your concern is understandable, seizures can seem to come out of nowhere and can be very frightening.

It’s important that your daughter talks to her doctor, and gets a referral to an epilepsy specialist for a diagnosis. The specialist, usually a neurologist, will try to determine if your daughter has epilepsy. With the right epilepsy medicine and the right dose, most people with epilepsy can stop their seizures.

As well as our details about getting a diagnosis, there is more information on our site which might help. This includes overviews about the treatment of epilepsy and what to do when someone has a seizure.

I hope that helps. If you or your daughter would like to talk about this in more depth, please feel free to ring our helpline on freephone 0808 800 5050.

Kind regards

Sacha
Epilepsy Action Advice and Information Team

 

Submitted by Sacha, Epilepsy... on

My son have a suizure at the sleep..he is 4 years old..i do the all test including EEG..all r clear but after 2 months he get an other suizure....now i m so worried

Submitted by Sam.. on

Hi Sam

Thanks for your message. It sounds like you are going through a very worrying time. It can be really distressing to see your child having seizures. 

You’ve posted this on our what is epilepsy page, so I’m guessing you are wondering whether or not your son has epilepsy. Epilepsy can be difficult to diagnose, as not all seizures are caused by epilepsy. We’ve got more information about how epilepsy is diagnosed. If you have not already, it would be a good idea to speak to your child’s doctor about the recent seizure. They should be able to give a clearer idea of what is causing your son’s seizures.

If your son does have epilepsy, there is a good chance that with the right treatment he could become seizure free. In fact, around 7 in 10 children with epilepsy can become seizure free. You might find it helps to read our information about children and epilepsy.

I hope this information is useful. If you have any questions feel free to contact the Epilepsy Action Helpline.

Best wishes
Grace
Advice and Information Team

Submitted by Grace, Epilepsy... on

I've had epilepsy since I had brain surgery at the age of 23. I'm now 43 and the last 5 years its got worse and worse. I have head rushes most days I'm told there mini fits. Its hard for people round me and love me to understand what its like and I feel for them. Would just like to hear from someone else how they feel

Submitted by gray on

Hello Gray
Getting people to understand what it is like to live with epilepsy is difficult. Some people tell us that they find it helpful to connect with other people living with epilepsy. If you would like to meet people in person, maybe you could check if we have a coffee and chat group in your area by searching our near me information.

You may also find it helpful to check out our online community forum4e where people with epilepsy can connect with each other, share stories and feel supported.

If we can be of any more help, or you want to talk more, please feel free to contact our helpline team.

Karen
Epilepsy Action Advice & Information Team

 

Submitted by Karen, Epilepsy... on

my 6 yr old son has just been diagnosed with epilepsy he has been having what we now know as seizures for over 2 yrs which gradually got worse.
What can i expect what changes will we need to make to ensure we are supporting him fully. i am very new to this and feel really scared as i have no idea how this will impact him in his everyday life.

Submitted by JANE HARPER on

Hi my name is Evelyn

i am currently 30 years old.
I have been having seizures since my 28 birthday prior to that i was a fit an healthy single parent.
however for the last 2 years i have been having seizures both at night and during the day for the last couple of months they have been getting worse and i am having up to 4 seizures in a day and it is taking my body a couple of weeks to recover as i have bruising and cuts to my body after my seizures.
I have had several black eyes, my mouth and tongue have been several damaged by my teeth i have also cracked and chipped quite a few teeth.
i am reaching a point where i feel very low and also have become house bound as my seizures happen quite frequently and i am not aware that they are about to happen.
i have asked for help andsupport from social services for me and my 2 daughters but was told that they were old enough to be my careers and that as i am able to was my self on the days that i am seizure free they cannot help me.
i feel very guilty that my daughters have to look after me and also like i have become a burden and that this cycle is just getting worse.
since i changed my hospitals as my previous hospital was not very helpful i only see my neurologist every few months.
i previously had an appointment in December that was cancelled until august this year i have tried to see what other appointments are available and was told that the next free appointment is in January 2017.
my doctor is unwilling to change my medication as they never put me on it to begin with.
i feel like i dont know what to do and that i am just waiting for my next seizure to happen.
even though i have have these seizure since i was 28 my neurologist still has not told me the name of the seizures i have even though he has been given a full description of what happens to me.
(falling to the ground,convulsions, fully blacking out,damage to lip and tongue by teeth, when i do wake up i am very confused and have no memory of what has happen or is going on bad headache unable to stay awake sleeping and vomiting).
i have read up on some information but would like some advice on this matter.
thank you
evelyn

Submitted by Evelyn Hammond on

Dear Evelyn
This sounds like a very difficult time for you and your children.

You raise lots of issues and I think we could help you most by speaking with you, rather than trying to help you on the website. If you would like to do that, please contact the Epilepsy Action Helpline freephone 0808 800 5050, and we will talk about your concerns with you.

Also you may wish to contact Carers UK and Barnardo’s who both offer information and support for young carers.  It may be you and your children are entitled to more support than social services said.

Regards

Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Well I'm 64yrs old July 5 th 2015 I had my first seizure .. June 14 th 2016 I had 6 seizures was in the hospital from the 14th to the 17th I did come home but with a cane because of my balance I'm female and scared will go to rehab to work on balance wow what shock I do not know when I'm having the seizure my husband has such a good heart and patience omg God bless him .thanks for listening

Submitted by AnnaClara Wilant on

Hi I have idiopathic generalised epilepsy since I was young I've tried all Meds n even had a vns put it last year to see that if that would help but after many problems with it am now on a waiting list 2 take it out am just wondering if any one has had problems like this as meds don't work as of side effects and am now getting really frustrated with it

Submitted by Diana Johnson on

Hi Diana
That sounds like a really difficult journey you’ve been on.

Certainly VNS doesn’t work for everyone.

If you want to know what other people’s experiences are, the best place is probably our online community forum4e.This is for people with epilepsy and carers of people with epilepsy. There are definitely people on there who have experience of the VNS.

I wonder if you have talked to anyone about the possibility of trying the ketogenic diet? It is gradually being made more available for adults.

I do hope there is something you find which makes life easier for you.

Regards
Cherry
Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on