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of everyone affected by epilepsy

What is epilepsy?

About epilepsy

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

If you have epilepsy, it means you have had more than one epileptic seizure and could have more in the future.

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity. This is often referred to as epileptic activity. This intense electrical activity causes a temporary disruption to the way the brain normally works, meaning that the brain’s messages become mixed up. The result is an epileptic seizure.

The brain is responsible for all the functions of your body. What you experience during a seizure will depend on where in your brain the epileptic activity begins and how widely and rapidly 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.

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 ten 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.

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Code: 
F092.02

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

  • Updated February 2013
    To be reviewed February 2015

Comments: read the 10 comments or add yours

Comments

hi im 15 and have photosentive epilepsy, and was wondering how long it last will it stay forever or will it go? i first has a sezuire on bonfire night we went to the fair and there was a a maze with strobe lights and i had a sezuire, is there anything i can do to not have sezuires because i want to go to festivals and prom when they take photos the camera flashes i dont know what to do and the medication im on is really confusing me?

Submitted by kirsty on

Hi Kirsty

Some young people do find that they grow out of epilepsy but others don’t. If you do grow out of your epilepsy it will usually be before you get to about 20 years old.

Of course you want to do the things that your friends do, like go to festivals and your prom, that’s understandable. It might help you to know that In the UK, the flash rate of strobe lights in such as discos, is restricted to no more than four flashes a second by the Health and Safety Executive. This rate is considered to be safe for most people with photosensitive epilepsy. However, some people may still find strobe lights could trigger a seizure, even at such a low flash rate. This is because some people are more, or less, sensitive than others.

I know you said your epilepsy medicine is confusing you, but taking your epilepsy medicine should lower your risk, or stop, seizures from happening. It might be that your dose needs slightly changing. You could talk to your doctor about it. However, even on epilepsy medicines there’s no guarantee you won’t have a seizure when you look directly at any flashing lights, but there should be less risk. We do have some information on our website about reducing the risk of seizures for people with photosensitive epilepsy. One of the precautions say to cover one eye with the palm of your hand immediately you see flashing lights, this might help.

Rosanna

Advice and Information Team

Submitted by Rosanna on

heya guys , im 12 and i suffer complex epilepsy & flashing lights doesn't affect me but stress & lack of sleep does , im on 4 types of medication and there called phyentoin , clobozam , oxicarbamarzapine & bucall medazalam§ does.

Submitted by Scarlett on

Hi team, Iam 65 and 2 days ago had my first seizure it started at 2300hrs. I got up, occupied myself mostly standing up until 0800hrs by which time my wife had dressed for the day.
I lay down and relax and let it wash over me. I just had time to get to the door call my wife then fell down and had a complete seizure, woke up in A & E. Does this make sense? can you control when it occurs in this way? I am now taking Lamotrigine.

Submitted by J Sharman on

Hello

If an epileptic seizure is going to happen, there’s nothing you can do to delay it or stop it from happening. So, you would not have been able to prevent an epileptic seizure from happening by keeping yourself occupied.

However, some people do find that their behaviour and mood can change, for a few minutes or even hours before they have a seizure.

I hope this helps.

Amanda

Advice and Information Team

Submitted by amanda on

I have dizzy spells during the night once a fortnight and am unsteady the next day. I take 0.25 tablet at night increasing when I have a dizzy turn Being 82 I can afford to take it easy for a day now and then.

Submitted by Richard Howard HARDY on

my friend was given a tablet from her other friend as she couldnt sleep due to the death of her son, she was given this tablet to help her sleep, 5 weeks later she died of brain damage, could this be connected to the tablet that she was given

Submitted by lynda waugh on

Dear Lynda

I am so sorry to hear about your friend. But I am afraid we don’t know the answer to your question.

Cherry

Advice and Information Team

Submitted by Cherry on

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

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