We exist to improve the lives
of everyone affected by epilepsy

What is epilepsy?

About epilepsy

In the UK, there are over 600,000 people with epilepsy.

Having epilepsy always means that you have a tendency to have epileptic seizures. It is not necessarily a life-long diagnosis.  And doctors may consider that you no longer have epilepsy if you go without seizures for a long enough time.

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This is often referred to as epileptic activity. The epileptic activity causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The brain is responsible for all the functions of your body. What happens to you during a seizure will depend on where in your brain the epileptic activity begins, and how widely and quickly it spreads.

For this reason, there are many different types of seizure, and each person will experience epilepsy in a way that is unique to them.

For the full ILAE clinical definition of epilepsy
Website: ilae.org

Epilepsy Action has more information about different types of seizures.

The causes of epilepsy

There are many types of epilepsy. Some types start when you are very young, and some in later life. Some types last for a short time and other types can last for the whole of your life.

Sometimes the reason epilepsy develops is clear. It could be because of brain damage caused by a difficult birth, a severe blow to the head, a stroke, or an infection of the brain such as meningitis. Very occasionally the cause is a brain tumour. In around six out of 10 people, doctors don’t know the cause of their epilepsy. For many of these people, it is just part of how they are made that makes them more likely to have a seizure.

How epilepsy is diagnosed

There isn’t a test that can prove that you do or you don’t have epilepsy. Tests such as the electroencephalogram (EEG) – which records brainwave patterns - can give doctors useful information. A diagnosis of epilepsy should be made by a doctor with specialist training in epilepsy.

To make a diagnosis, an epilepsy specialist will use their expert knowledge and look at the information from different tests. They will ask you what happens before, during and after your seizures. They might also want to speak to someone else who has seen your seizures.

Epilepsy is currently defined as the tendency to have recurrent seizures. It is unusual to be diagnosed with epilepsy after only one seizure. Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy.

Epilepsy Action has more information about how epilepsy is diagnosed.

Treatment of epilepsy

Epilepsy is usually treated with epilepsy medicines. You may also hear these referred to as anti-epileptic drugs (AEDs). Epilepsy medicines act on the brain, trying to reduce seizures or stop seizures from happening. Lots of people with epilepsy find that when they have the right medicine, they have fewer or no seizures. In the UK 70 per cent (seven out of ten) of people with epilepsy could be seizure free with the right treatment.

Epilepsy Action has more information about epilepsy medicines.

If epilepsy medicines don’t work very well for a person, there are some other treatments that may be helpful. These include brain surgery, vagus nerve stimulation and the ketogenic diet.

Epilepsy Action has more information about brain surgery,vagus nerve stimulation and the ketogenic diet.

If you would like to see this information with references, visit the Advice and Information references section of our website. See What is epilepsy?

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
Code: 
F092.02

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

  • Updated February 2013
    To be reviewed February 2016

Comments: read the 12 comments or add yours

Comments

Hiya im 20 ive had epilepsy since i was 13 due to having a severe acquired brain injury called encephalitis im on sodium valporate also known as epilim im also diabetic type 1 which is pretty well controlled i get very anxious and scared im going to have a seizure when im on my own as i live on my own i was wondering if there was a panic button or something i can get because im epileptic. Ive seen the prices and there very expensive was hoping there was any help epileptics can get from teams etc. Also i think my fits are clonic tonic seizures but i always no a few mins before im gunna have one thankyou from laura

Submitted by Laura on

Hi Laura

There are a few different things to think about with an alarm system.

As you get a warning, it may be that you could contact someone on your mobile for help at that point. If you have someone who would be able to respond, that could be the best and cheapest thing to do.

If you want an alarm that rings at a centre, where someone would come out to you, this is a paid service and yes, it would probably be quite expensive. This is called a telecare alarm.

I am linking you to the Disabled Living Foundation information about them.

You could ask social services for an assessment. They could help you identify what might help most and whether they would be able to make any financial contribution. I’m not sure exactly how much they could help, but it would certainly be worth asking. And even if they couldn’t help, themselves, they may be able to point you to someone who could help.

A different option would be possibly looking at some accommodation where you could get a bit more support. Some Housing Associations offer these. You could ask you local council about these.

I do hope this gives you a few possible ways forward.

Cherry

Advice and Information Team

Submitted by Cherry on

Hi, my uncle had severe epilepsy, we think it started after a car accident when he was little. They only happened in his sleep.

Unfortunately, we found him dead and it was confirmed as SUDEP. I wish I had known more about epilepsy, I don't think people understand the risks connected with epilepsy, although it isn't common that this happens, I do think that the doctors do review their medication and rather than try people on different medication that they are referred to someone with greater understanding. Maybe this could have been, if not prevented, then perhaps controlled.

I, personally have found this website a great deal of comfort albeit a little too late, I will definitely be making donations and raising as much awareness as I can. I just think those who have epilepsy should have their friends and family made more aware by the symptoms and their doctors take a greater understanding to this condition too

Submitted by Kristi on

Hi Kristi

I’m so sorry to hear your uncle passed away. It must be a very painful time for you and your family.

We work towards raising awareness of SUDEP so hopefully we can prevent others having to experience what your family is going through. If you are interested in getting involved with raising awareness of SUDEP or general epilepsy issues please contact our campaigns team, campaigns@epilepsy.org.uk.

It’s great that you would like to raise funds for people with epilepsy in memory of your uncle. Many people consider this to be a fitting tribute to their loved ones, and there are lots of ways in which we can support you in your fundraising. When you feel ready, our fundraising team will be happy to assist you – you can reach them on funding@epilepsy.org.uk or by calling 0808 800 3030 & select fundraising.

If you have any further questions on SUDEP or you’d like to talk to us about your uncle, please feel free to contact me again, either by email helpline@epilepsy.org.uk or the Epilepsy Helpline freephone 0808 800 5050.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane-Epilepsy ... on

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