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Epilepsy-related deaths

In this section:

Help and support for people who have been affected by an epilepsy-related death

During 2013, 1,187 people in the UK with epilepsy died earlier than expected (premature death). Some of these deaths could have been prevented.
This information is for you whether you have epilepsy yourself, or you care for someone with epilepsy. It is also for you if someone you know has died from an epilepsy-related death.

Why it’s important to talk about epilepsy-related deaths

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. Knowing about the risks can help you to make decisions about your epilepsy treatment and your lifestyle.

If you would like to speak to one of our advisers about epilepsy-related death, please contact the Epilepsy Action Helpline

These are some of the causes for epilepsy-related deaths:

  • Sudden unexpected death in epilepsy
  • Accidents
  • Status epilepticus
  • Suicide
  • Deaths during pregnancy

Sudden unexpected death in epilepsy (SUDEP)

The definition of SUDEP

If someone with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP).

Premature death in people with epilepsy is higher than in the general population, and SUDEP is the most common cause of this.

SUDEP has been shown to be connected with seizures, particularly tonic-clonic (convulsive) seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.

What is my risk of SUDEP?

Like cot deaths, no one can say whether or not a person is in danger of SUDEP. But there is evidence that the risks are different for different groups of people.

  • If you have epilepsy, your risk is 1 in 1000
  • If you have frequent tonic-clonic seizures, you have an increased risk, particularly if they happen during sleep
  • If you are being considered for epilepsy surgery, you are considered to be at increased risk
  • If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
  • If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
  • If you have absence or myoclonic seizures, you are not known to be at increased risk
  • If you have very few seizures, you are at a lower risk, but still at risk

Ways to reduce the risks of SUDEP if you have epilepsy

Seizure control

The most effective way to reduce the risk of SUDEP is to have as few seizures as possible.

If your seizures are not controlled, here are some ways to manage your epilepsy:

  • Always take your epilepsy medicines exactly as prescribed
  • Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first
  • Make sure you never run out of your epilepsy medicines
  • Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines
  • Ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery
  • Try not to sleep on your stomach as recent research suggests that people with epilepsy who sleep on their stomach may be at higher risk of SUDEP

Other possible helpful ideas:

  • Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures
  • Avoid situations which may trigger your seizures. Common triggers include forgotten epilepsy medicines, lack of sleep, stress and too much alcohol
  • Consider buying a safety pillow. Safety pillows have small holes. They may help you breathe more easily than a normal pillow if you are lying face down during a seizure. There is no evidence however that safety pillows reduce the risk of SUDEP
  • If your seizures happen at night, talk to your family doctor or epilepsy specialist nurse about using a bed alarm. Bed alarms can alert another person if you have a seizure. This will help the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms can be very expensive and are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)
  • Tell people about your epilepsy and let them know how they can help you if you have a tonic-clonic seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy

For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.

If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Action Helpline, 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.

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


Epilepsy Action would like to thank Consultant Neurologist Dr John Paul Leach of Southern General Hospital Glasgow for his contributions to this information. He has declared no conflict of interest.

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

  • Updated April 2016
    To be reviewed April 2019

Comments: read the 25 comments or add yours


My 52 year old sister passed away 15.5.15 she was diagnosed with grand mal epilepsy from baby she had so many episodes over the years that caused her to fall and injure herself we lost count over the years she had seen many doctors and consultants she had been on many different medication for the condition she went through a bad time after her husband passed away. 9 years prior every time she was sent to hospital for tests and scans they would not be able to find anything she even went under the being videoed over a 4day period in hospital but as usual no doctor had seen her in one of her attacks until she was admitted to hospital on the 12.5.15 and sent home on the 14.5.15 she sadly passed away on the 15.5.15 the out come was SUDEP. We as a family had not known about this until I read about the many other sad losses of the many families that have had to come to deal with SUDEP.
RIP Susan love and miss you always xx

Submitted by Sharon evans on

Dear Sharon

I’m so very sorry to hear about what happened for your sister. That must have been such a terrible shock for you.

I hope you have found out about the organisation SUDEP Action. They offer support to people who has lost a loved one to SUDEP.  You might find it really useful to talk to them, if you haven’t already done so.

Different doctors have different approaches on when or if to talk about SUDEP. But we have received enough feedback from people like yourselves, to make it clear that people should be told about the dangers of SUDEP right at the point of the diagnosis. This could, in a small way, help with the shock and confusion felt by the family.

As well as SUDEP Action, if it will help to talk to us, you are more than welcome to ring our Epilepsy Action freephone Helpline on 0808 800 5050.

It will take time, but I do hope things start to feel a little bit easier for you with time.


Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by 37204 on

I have had epilepsy for 53 years since auto accident at age 17. About 14 years ago, I had left temporal surgery and it completely stopped all day seizures, however it began nocturnal seizures. I still get these and I have continued drugs. I take Lamictal and Clorazepam . It is scary in a way since the thought of SUDEP is on mind.

Submitted by doris on

Hi Doris

Thanks for your message. It sounds like you’ve been through a tough time, and I can completely understand your fears about SUDEP. But it’s important to remember that SUDEP is rare, and there are things you can do to reduce the risks even further. You could ask your doctor for a review of your treatment to try to get your seizures under control. If you’ve not already been seen by an epilepsy specialist centre, you could ask for a referral to one. Current guidelines say that if your epilepsy is not controlled after you’ve tried two medicines, or after two years, you should be referred to a specialist centre. You might find it useful to read our information about how to ask for a treatment review.

If you live with someone, you might want to consider using a bed alarm. This can alert them if you have a seizure in the night, so they can help you by putting you in the recovery position or calling an ambulance if needed. We’ve got information further up this page about organisations that supply bed alarms.

Some research also suggests that people who sleep on their stomach are at higher risk of SUDEP. So if you are able, you might reduce your risk by not sleeping on your stomach. Some people who have sleep seizures also use anti-suffocation pillows. We’re not aware of any research that proves these are safer, but if you are interested in using one it would be worth discussing this with your epilepsy specialist or epilepsy nurse.

I hope this information is useful. If you would like to talk anything though feel free to contact our helpline.

Best wishes

Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hello, my name is Stacey but liked to be called 'Stacee' I am 17 years of age and had been diagnosed in 2012 with 'idiopathic generalized epilepsy' with JME, i am on 250 levetiractam keppra and I have quite a few 'Tonic clonic' seizures and when I do have them they are always very severe that I stop breathing and need medical care. I have read so much about 'SUDEP' have spoken to my epilepsy specialist and gp and they have given me leaflets with loads of information, but in the real world so many people have lost their familes to SUDEP and everyone hardly brings it to the attention. how can i live life knowing i can die from a seizure or SUDEP really what is the point i am that depressed about sudep that i need a way out.

Submitted by Stacee on

Hello Stacee

Thanks for your message. It sounds like you’ve been through a really tough time. The thought of SUDEP can be very scary and it’s natural to worry about it. But if you are feeling depressed and like you need a way out it’s really important to talk to someone. If you talk to your family doctor they should be able to help. You can also call us on the Epilepsy Action Helpline, and the Samaritans are available 24 hours a day on 08457 90 90 90.

We think people should be aware of the risks of epilepsy, including SUDEP. But it’s also important to remember the risk of dying from epilepsy is small, and there are things you can do to reduce the risk further. One of the most important things you can do is talk to your doctor or epilepsy specialist about getting your seizures under control. They can make sure you are on the right treatment. 250mg is a low dose of Keppra, so it could be that increasing the dose could stop or reduce your seizures. Or the doctor might decide that a different epilepsy medicine would work better. It’s important not to make any changes to your medication without  getting medical advice, so talk to your doctor first.

Once you are on the right treatment there’s a really good chance you could be seizure free. In fact with the right treatment 7 out of 10 people with epilepsy could be seizure free. And once you are seizure free your risk of SUDEP will be extremely low.

Best wishes
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I began to have sleep seizures in 2007 which was complicated by a cancer diagnosis at the same time. I was tested for allergies to medication and continued to have seizures until epilepsy was finally diagnosed in 2009 and I was put on Keppra. I had a bad reaction to Keppra and was slowly changed to Lamotrigine. My seizures are now controlled and I have been seizure and cancer free for some years.
Until today I have never heard of Sudep and am now genuinely scared! I have read that sleep seizures put you at higher risk. I currently don't sleep alone as is am married but, as I am in the military and move around a lot, this means that I may have to live in single living accommodation.
I also am currently refusing to work night shifts which obviously affects my work. I am scared to work them as my epilepsy nurse has said it will put me at higher risk of seizures even on medication. I am thinking of a pillow alarm now, and will work on spreading awareness of Sudep. Thanks all for more info.

Submitted by Fiona on

I've been epileptic since the age of 10. Having only just heard of SUDEP from a tv programme, I decided this morning to look it up and wanted to know more about it! I didn't know this existed! I'm 25 now so 15 years of seeing specialists and not being told anything. I will make sure my parents and friends are aware of this.
My epilepsy all started through a my parents having difficult break up resulting in no contact with my biological father. - the best thing for me and my 3 sisters! Until the age of 12-13 I was on epilim medication and seizure free when I decided I was "fine and wanted to be normal" so stopped taking my medication! I don't recommend this. From there till the age of 21 I was seizure free and happy! In university one day I had a seizure luckily sat down in a lecture, embarrassed and gutted didn't come close to how I felt. From there on it had started again. I lost my driving license, to me one of the biggest things. Initially I didn't go back on medication as it was seen as a "one off" and I didn't want to go back on medication. From then on I briefly got my driving licence back before another seizure in work, another embarrassing moment!
5 weeks and 1 day till I got my driving licence back I recently have had another fit in work. This time thou I was stood up and dropped to the floor knocking myself unconscious. When reading what triggers I can tick all the boxes. I'm currently suffering panic attacks, my job is very stressful (I'm a nurse) and I'm not sleeping well as worrying about work. I have in the past not taking my meds, I learnt the hard way so something I make sure I never do this again. I'm now having my meds increased slightly over 2 weeks under consultant instructions.
Reading this I'm realising how lucky I am. I've read the stories about and so sorry to people who have lost a loved one through this. It needs to be made aware not just to people with epilepsy but family/friends too!
I am one who doesn't want people knowing unless they have too as I don't want to be seen/treated differently from "normal" people.

Submitted by Lizzie on

Hi Lizze
It must have been a shock learning about SUDEP this way.

We agree with you, we believe that it is very important for not just the person with epilepsy to be aware but also their families too.  

I hope your epilepsy medicine works well and you get your seizures controlled again.


Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by 37204 on

Hi I've just recently found out about sudep. I was having mildish seizures when I turned 13, some people thought I was doing it for attention. When I met my older boyfriend, I was 15 at the time, he believed me as he witnessed in my sleep tonic clinic seizures. I would come round and thee bed would be wet I'd been bleeding from my mouth and covered in scratches. I had very frequent seizures, milder seizures when I was awake. I was diagnosed around 17 years old with frontal lobe epilepsy, there is no family history of epilepsy. But I was a forceps delivery. At 17 I was put on tegrotol which immediately stopped the seizures. Then a few years later they tried to take me off them, but then I had a seizure in the bath, if I handed of cried out my partner would not of heard, even though he had a close eye on me. I was then put back on the tegrotol. I am now 35 and havnt had a seizure since then from about 18. But I am still on the tegrotol. If I miss a dose, I have an aura warning, so I know it hasn't gone, its just not worth the risk coming off tablets. Plus I have a teenage son of 14 and 10 year old girl. I am really shocked about this sudepas I think my god I could of died. What is my risk now, of having no seizures for a long time but still reliant on medication?. I'm worried as I have children. Thank you so much

Submitted by Zoe on

Hi Zoe
Many thanks for your message. I can hear that this is worrying you at the moment.

Learning about SUDEP for the first time can be scary. It is important to remember that the risks of dying because of epilepsy are low, and as this article says, there are some other ways to reduce the risks. The risk of SUDEP if you are seizure free is very, very low.

The most effective, but sometimes most difficult way of reducing your risk of SUDEP is to control your seizures. It is positive that you have found an epilepsy medicine which helps you to control your seizures. It sounds as though you currently have very good seizure control and have had for a long time. If at any time though you are worried about your epilepsy, or your epilepsy treatment, always remember you can contact your epilepsy specialist to talk about it.

Approximately six out of 10 people never find out a cause for their epilepsy. Some people tell us that they have found it reassuring to follow our safety advice, which offers some tips for reducing the risk of injury if you have a seizure at home. Making sure people around you know what to do if you have a seizure may be a good way to reduce any worries you may have. We also have information about a variety of daily living aids on our website which may be helpful. Every person’s epilepsy is individual to them, so each person finds their own ways to live with it on a day to day basis.

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

Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Hi my son Alan died aged 30.he had seizures on off for 4 years.they would stop he would get his licence back.then they started again but he did not say ..He did not want to lose is licence.so many if buts maybe's.take your medication please don't let another family go through what we are.

Submitted by linda wilton on

Completely out of the blue, I found my daughter collapsed and unresponsive in 2004 with her 11 month old daughter beside her.
After a dreadfully traumatic time in resus and intensive care, she was eventually diagnosed with epilepsy and told to take medication and get on with her life.
After a battle with the PCT we managed to get a referral to the Walton Centre in Liverpool without which my daughter would not be alive today.
We managed to get a more thorough diagnosis ie my daughter's seizures only happen during her sleep and she goes straight into 'status' needing urgent hospital admission as the seizures continue (clusters)
After doing some research and finding the word SUDEP, I asked the Consultant THE question and yes he said she is at high risk.
This is definitely NOT what any parent wants to here, but I felt empowered and grateful that I could move in with them and prevent it from happening.
I believe some members of the medical profession feel that they are scaremongering and don't tell you, but I for one would prefer the truth and it has saved my daughter's life and prevented my granddaughter from being orphaned. It speaks for itself.

Submitted by Jane Phipps on

Hi my girlfriend has just recently passed I found her in bed the cause of death is not obvious do more tests she had epelepsy since a car accident she was admitted to hospital with a broken hip as this happened at home she took her tablets with her but hospital took them and never gave them back she started having seizures caused by electric in air then stopped she never got her meds as hospital still had them sadly she passed on 25-10-2015 I miss her so much and don't no what to do god rest her sole

Submitted by richardcurtis on

Dear Richard
I’m so sorry to hear of your girlfriend’s death. I can’t imagine the pain and anguish you must have gone through at the time and are still experiencing.

It must be difficult to accept but if your girlfriend did die due to her epilepsy, there’s no way of predicting it.

When someone with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it’s called sudden unexpected death in epilepsy (SUDEP).

If the enquiry into your girlfriends death states SUDEP as the cause, you could contact the organisation SUDEP Action. They supports people who have lost a loved one to epilepsy. You might find it really useful to talk to them.

The charity Cruse Bereavement Care can also offer support to you 

If you and your girlfriend’s family believe her hospital was any way involved in her death, hopefully this will be looked at during the enquiry. Another option could be to talk to the Patient Advice and Liaison Service (PALS). They offer confidential advice, support and information on health-related matters and service to patients, their families and their carers. Find your local PALS office.

I do hope things start to feel a little bit easier for you over time. If we can be of any more help, please feel free to contact us again, either by email helpline@epilepsy.org.ukor the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

Thanks so much for this resource. Our 17-year-old daughter just lost a school mate -- of only 15. None of us had ever heard of SUDEP, or had any idea of the risks she faced . . the 'normal' course of her illness was difficult enough. As heartbreaking as these stories are, it helps to know that this dear girl and her family are not alone in their trials and grief.

Submitted by Rick Stadel on

We’re really glad it’s helpful. It can be such a difficult death to understand. I do hope your daughter is getting the support she needs.

Advice and Information team

Submitted by Cherry, Epileps... on

Today, at the neurologist I was informed of SUDEP for the first time. As a registered nurse for 20 years, I'd never heard of it. I don't know why I developed epilepsy as an adult aged 40. It just started one day out of the blue. So far I've fractured my arm and nose. I'm just coping one day at a time, but it's tough not knowing when a tonic clonic seizure will occur and having them in a public place.

Submitted by Ken on

Hi Ken
To be diagnosed with epilepsy must have been a big shock. And the injuries you have experienced sound very painful and distressing. I hope you have started epilepsy treatment to try and stop future seizures.

Most people think epilepsy starts in childhood but as you have found out, it can develop at any age. It will take time to come to terms and for your confidence to return.  But I hope Epilepsy Action can help you in some way.

Apart from our website, we have our local groups, including coffee & chat groups, our online community, forum4e , and we are on facebook and twitter.

We also have a membership scheme, which keeps people up to date with information through our magazine Epilepsy Today.

When you are going out, some people choose to wear identity jewellery or carry an ID card with them to let other people know that they have epilepsy. On our epilepsy awareness cards you can write what someone should do to help you and who to contact. If you would like some awareness cards please email or phone our helpline team.  Or you can order a card from our online shop.

Being told about SUDEP was obviously something you weren’t expecting. Although it must have been scary and caused you to worry, Epilepsy Action believes that it’s very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. I hope you will find our information on Sudden Unexpected Death in Epilepsy informative. Our information is not to frighten people but to give them the best chance of keeping themselves as safe as possible.

If it will help you to talk to someone on Epilepsy Action Helpline freephone 0808 800 5050, we are open Monday to Friday, 8.30am until 5.30pm.

If we can be of any more help, please feel free to contact us again. You can contact us directly, either by email helpline@epilepsy.org.uk  or phoning Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

I recently lost a guy that I was seeing due to SUDEP and I don't know a lot except for what I've been able to find online the last couple days. I was asleep when it happened and found him later already too late to do anything. My questions are: Do they know whats happening? Do they feel any pain? Had I been awake and sitting next to him could I have saved him? Would he have survived even if he had to be resuscitated? I really need to know if there is something I could have done, the not knowing is eating me up. He was in his early 40's and healthy as can be except for his unexpected passing. How is death determined? I ask that because we had to wait on toxicology results due to the autopsy being inconclusive. Why do they say its inconclusive?

Submitted by Grieving for Him on

I’m so sorry to hear of your friend’s death. I can’t imagine the pain and anguish you must have gone through at the time and are still experiencing.  It must have been such a terrible shock for you.

Trying to find answers to your questions is understandable. To help you with this, and for support from others who understand what you are going through, you will find it helpful to contact SUDEP Action. They supports people who have lost a loved one to epilepsy.

I hope this is of help.

Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

Lost my son to epilepsy,23 years old..always ask,why?

Submitted by David Taylor on

Hi David
Not having an answer for why your son died, must be really hard, however long ago it happened.

Our thoughts are with you.

Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

How many UK road accidents were caused by a driver having a seizure at the wheel? What is the probability of having a seizure at the wheel following a previous seizure as a time function. So, what is the statistical basis of the DVLA's requirement for a 12months interval. Have the social consequences of a 12month driving ban been assessed?


Hi Donald

We don’t have these figures ourselves, but you may find the answers you are looking for in this report from the European Working Group on Epilepsy and Driving in Europe. The advice in this report informed the EU Directive on epilepsy and driving, which the DVLA rules are based on.

Best wishes


Epilepsy Action Helpline Team

Submitted by Grace-Epilepsy ... on