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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 19 comments or add yours

Comments

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

My husband was diagnosed 3 year ago with epilepsy.After a siezure he is paralysed down right hand side of body , for at least 24 hours.The surgeon told us they think he had a stroke when in his mums womb.The left frontal cleff of his brain has not developed ,and has 5 cysts floating in water.Would you know if he going to be left with siezures all his life. It is very scarey to watch and dont get any information or help.Your information has been really helpful and I would like to thankyou.

Submitted by Jean davidson on

Hi Jean

 

It sounds like you and your husband have a great deal to cope with. Thank you for your encouraging words about our information.

Most people find it really scary to watch someone having a seizure. Hopefully it will become a little less scary in time.

 

We aren’t medically trained. So we can’t answer your very understandable question about the future.

If your husband’s seizures are caused by the brain damage, then unless the brain damage changes, it is likely his seizures will continue.

 

The paralysis following the seizures could be Todd’s paresis.

 

I really hope this helps a little. And that it is possible to get his seizures more under control over time.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Regards

 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich 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

Hi my name is Janet I am 43 years old and i have recently been diagonised with epilepsy, i had my first seizure in may 2015. I was finally after 18 months and many seizures later had a diaginius , I am on medication but i still had seizures,but reading this page was very informative it was useful to read.

Submitted by Janet on

Hi my daughter is 5yrs old and been diagnosed with epilepsy from may 2015. The cause of her epilepsy is from when she was 5 weeks had took a stroke and has brain damage. Well recently she has been saying to me only 1 side face/arm/leg is feeling weird like its shaking but wen u feel i dont feel anything. She takes partical focal seizures would that be a type of seizure or something to worry about x

Submitted by DANIELLE JOHNSTON on

Hi Danielle 

Your daughter’s feeling of weakness down one side could be linked to where the epilepsy activity is happening in her brain.

If it is connected to the brain damage it is likely to be on the opposite side of her body. And yes, it may be a type of seizure.

But it may not be connected to the epilepsy at all. So because it’s a new symptom, I would suggest talking to your family doctor about it.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi, I am 28 years old female. I was diagnosed with epilepsy at the age of 17. I used to get seizure almost regularly every month.I was & I am still on medication. Doctors told me that its life long one, cant be cured by any surgery, nor can cure entirely,only can reduce the seizure frequency.

I got married at the age of 20. I delivered my first baby at the age of 24. I got severe epileptic attack on my 6th month last due to that I fall & hurt my tummy with baby. Husband & other people rushed me to hospital.

I don't remember anything, but as per records I delivered baby via "c" section that evening itself. My baby girl survived in NICU. She was in incubator for almost 3 months.

I went through depression, stress & all. But still I didn't loose hope. Baby girl was safe, we bought her back home. She is good & healthy now. I started my career & continuing my studies. I am working with an MNC. It was a turning point. I felt happy & forget that I am a epileptic patient.

But the sad part is when other people see me or when they pass by,or other example is my husband & his friends started spreading rumors that I am an epileptic patient & due to it I am mental. They all look at me like a mental person. That gives me more pain.

I personally think people should be aware of epileptic conditions. Some times I think whether am I a mental patient as what they say?

Submitted by Revathy on

I was luckily diagnosed at a young age with epilepsy by my mum who also suffers with epilepsy. At first I was reluctant and his medication however after a while I became aware of what relatives said about epilepsy and differences in episodes. Luckily I suffer from a mild epilepsy, providing I take the medication my doctor prescribed. It was horrible at first because when visiting the doctors for help and treatment, I hated being in the surgery and being analysed by someone who wasn't my mother. After a year of going through doctors who for differentiating reasons, couldn't help with my epilepsy, my mum had appealed and was finally recommended to a neurologist who specialises in epilepsy in children. After only a few months I was put on the right course of treatment and over the past two years have slowly become more aware of the world around me. Growing up as a child I struggled to understand the world around me and have been told it was probably because I often had 'blank out' seizures, which is when you are there but your mind goes blank because the neurotransmitters aren't crossing the synapses in your brain properly, so even if you are listening your main focus is on anfar off place. To compensate for this I was a bit closed off from a lot of my peers and had many imaginary friends growing up, however faced a lot of bullying because my peers thought I was strange and were just a little bit less aware than me about my epilepsy. My mum was desperate to get me to socialise, despite being a happy go lucky sort of child, I still struggled with socialising as other children did, and she would often go all out on presents for children when I was invited to parties. As niave child I thought everyone was my friend and wanted my whole class to come to my birthdays. Only my teachers knew vaguely what was going on. After primary school and throughout high school I've slowly started adjusting to a normal life minus the medication dayly and nightly. I'm so thankful for mums support and am glad I was able to get the right treatment even if the condition is still mystery to me. All I know is that so long as I take my medication when I wake up and before I go to bed I can live a relatively normal life and no one needs to know of my epilepsy. After my treatment was regulated and confirmed I was involved in a study where I spent a day under tests for different responses. I hope epilepsy research continues so that treatment for people who aren't as lucky as me can one day live a normal life. At the moment I'm aiming to finish college and move onto a full-time job.

Submitted by JustPassingThrough on

Hi I have had 5 fits now over the last few years the most recent one was a month ago today and the one I had before that was about four years ago maybe in 2002 I went to see a neurologist and had some tests and they all came back fine this most recent fit was different from the rest as the others I just collapsed and I was told I was shacking the one I had a month ago I think I knew it was going to happen as I got all light headed and I saw yellow dots for a few seconds then the dots changed to rainbows ive been referred to a neurologist to have more tests done bit not sure how long it will take for the appointment is there any help u could give me as to why these are happening

Submitted by Marc on

Hello Marc
The way a seizure affects a person depends on the area of the brain that the burst of electrical activity happens in. Some people do get a warning that a seizure is going to happen, whereas others do not. We have some information on our website about different seizure typeswhich tells you more about this.

Sometimes a person may notice that their seizures change. It is possible that the symptoms you are having are related to your epilepsy, but they also may not be. It is good to hear that you have been referred back to your neurologist as this will give you chance to try to find a cause for what is happening. This will also give you an opportunity to talk about what has been happening and to check whether any treatment you are getting is still the best for you.

The time it takes to see a neurologist and start treatment if necessary can vary depending on where you are in the UK. Guidelines say that these are:

I hope you get to see a neurologist soon. If you want to talk about this, or if we can be of any more help please feel free to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen - Epileps... on

Can I just thank the website for all the useful information. I've had one nocturnal seizure the other month I've always had de ja vu and impending doom feelings. I've been put on meds and left your site has been invaluable I've had so many questions thanks

Submitted by Marie on

Hi Marie,

Thank you so much for the feedback. We were glad to have helped.

Rich - Epilepsy Action

Submitted by rich on