Sudden unexpected death in epilepsy (SUDEP)

Most of the time, people with epilepsy recover perfectly well after a seizure. A very small number of people die due to an injury that has happened because of a seizure. In some cases, there’s no clear reason why a person with epilepsy has died. If a person with epilepsy dies unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.

How often SUDEP happens

In the UK, about 602,000 people have epilepsy. It’s estimated that SUDEP causes about 500 deaths each year. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.

The causes of SUDEP

SUDEP has been shown to be connected with seizures, but the exact cause is not known. Research suggests that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. Very occasionally this may cause the person to stop breathing and not start again.

Risk factors of SUDEP

There is no way of predicting who will be affected by SUDEP. But the single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure which causes the person to lose consciousness. Their body goes stiff and then starts jerking.

Each person with epilepsy has their own level of risk of SUDEP. It can occur in people who have seizures very often or very infrequently. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP in people who are seizure-free is very, very low.

Here are some factors which may increase a person’s risk of SUDEP.

Having generalised tonic-clonic seizures
Not taking anti-epileptic drugs (AEDs) as prescribed
Having seizures that are not controlled by AEDs
Having sudden and frequent changes to AEDs
Being a young adult (in particular male)
Having sleep seizures
Having seizures when alone
Drinking large amounts of alcohol

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 that you can manage your epilepsy, to try and reduce them.

Always take your anti-epileptic drugs (AEDs) as prescribed.
Never stop taking your AEDs, or make changes to them, without talking to your doctor first.
Make sure that you never run out of your AEDs.
Ask your epilepsy specialist or epilepsy specialist nurse in advance what you should do if you ever forget to take your AEDs at your usual time.
If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They can suggest changes to your AEDs or other treatment options, which may include surgery or vagus nerve stimulation.
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 or anything that may trigger your seizures.
Avoid situations which may trigger your seizures. Common triggers include forgetting to take AEDs, lack of sleep, stress, lack of food and too much alcohol.

If you live in the UK and your epilepsy is very difficult to control, you may be entitled to go to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.

Other ways to reduce risk

If your seizures happen at night, consider using a bed alarm. Bed alarms can alert another person if you are having a seizure, so they can help you. For example, they can call for an ambulance, if they feel this is necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or set off without a reason.) Information about bed alarms is available from the Disabled Living Foundation.
Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may wish to wear identity jewellery or carry some form of epilepsy awareness card to alert other people to your epilepsy.
Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do.

Ways to reduce the risks of SUDEP for someone who is having a seizure

Recovery position You may be with someone when they have a seizure which causes them to lose consciousness. Most people recover perfectly well after a seizure, but here are some things you can do to help them recover.

When the seizure is over, put the person on their side in the recovery position (see the picture). This can help them to breathe.
If the person is having difficulty breathing, gently move their limbs. This may encourage breathing to start properly again.
If the person is still having difficulty breathing, call for an ambulance.

Call for an ambulance if...

You know it is the person’s first seizure, or
The seizure continues for more than five minutes, or
One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
The person is injured during the seizure, or
You believe the person needs urgent medical attention

Further information about SUDEP

Epilepsy Bereaved

Epilepsy Bereaved offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.

Telephone:
UK callers: 01235 772 852
International Callers : +44 1235 772 852

Website: http://www.sudep.org/

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:

F06.02

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

Updated January 2011

To be reviewed January 2013

Comments: read the 17 comments or add yours

Comments

I am a 31 year old lady... I was diagnosed with Epilepsy when I was 16... I am now (after trying many meds) on Carbamazapine and Pregabalin , still uncontrolled.
7 years ago I broke my spine twice in the same year, and since then was scared of my Epilepsy.. I was very lucky to still be alive and to not be paralyzed. Doctors told me the same thing.
4 weeks ago... I had a really bad seizure where I stopped breathing, I turned blue all over my face, especially around my mouth, there was froth blocked at the back of my throat, my partner put his fingers in my mouth to remove it and put me into recovery position, where I started to breath again, and the colour came back to my face.
I thank god he was there, otherwise I wouldn't be writing this now!!!
I have been having seizures often in my sleep.... I am so frightened... I have a 12 year old daughter, who I want to live to see her grow up.
I have 3 different types of seizures, so it's hard to not think about it as they happen often.
I also feel awful writing this, reading some of the comments from some people on here who have lost loved ones... MY HEART AND THOUGHTS GO OUT TO YOU ALL.

I know I need to be strong and not allow the fear to take over otherwise, the risk is higher.

I feel I have been lucky escaping death these 3 times, and wonder will I be so lucky next time?

Maybe it's best I do invest in one of those alarms, which I have put off, because I feel Epilepsy has taken over my life and having one of those, just makes it seem even more controlling... I want a normal life, but hey, what is a normal life?

Marianna.

its 2 years today when my 22 year old sister passed away. her death cert reported SUDEP. I still cant believe she's gone, I replay that day over and over in my head and it still makes no sense. Why does a healthy 22 year old just die? WHY? she was a mother to and 8 month old boy when she died, he doesnt even remember her now. she had mild epilespy since the age of 14, she only ever had 6 small seizures in her short lifetime, none of which were serious enough for her to be hospitalised. She hadnt had a seizure for 4 years prior to her death. I miss her sooooo much, I have had a heavy heart since she left us and today magnifies the loss. 2 years have flown by so quickly, her boy is almost 3 and he looks just like her. My heart goes out to anyone that has loved and lost, peace and light to all xxxxxxxxxxxxxxxx

I am so sorry to hear from the families on here that have lost a loved one to SUDEP... I have an 18yr old daughter who has suffered with various siezures since being 5yrs old as a result of Rasmussens Syndrome, the syndrome left my perfectly healthy child with learning difficulties, a weakness down one side of her body, blindness & took away her speech. Even though she has had 2 brain ops the thing that always scared me most was leaving her alone at night as she often has seizures through the night (i was never offered a mat at this time or even knew they existed!!)... Her seizures improved for 2 yrs after the second brain op but unfortunately returned as tonic clonic ones last yr & my fear of leaving her alone whilst she slept increased especially as the seizure would last for upto 3 mins & restrict her breathing... after so many sleepless nights next to her, i pleaded with her occupational health worker.. The result being getting her a mat to place under her bed FREE!!!... I'm not saying the mats are perfect, they often falsely go off in the night... but life has significantly improved since... so i urge any of you who are under huge amounts of stress & worry over this issue to harrass your occupational health or social workers until they provide you with one.

My son Gavin died of sudep on the 14th of April 2011, aged just 25. i will never forget that day i had just come back from doing some shopping and as i came in thge back door and shouted hi Gav i got no answer i went into his room which was downstairs and he was slumped on his knees leaning on his bookcase i went over to see what was wrong and as soon as i seen him i knew he had passed away. I always feel if i was at home i could have done something but i was told there was nothing i could have have done but it doesnt stop you from wondering. Sandra Moseley mother of the beautiful Gavin/xxxxxxxxxx.

I am currently applying for DLA. I have seizures on a regular basis every one to two weeks, maximum 3 weeks if i am lucky. I have complex partial seizures and tonic clonic without warning.
This has been the case for 2 + years now and control is no nearer despite drug changes.
Am i at risk if on my own? I feel very concerned and worried and usually friends or family or colleagues are with me.
DLA say i do not qualify under their assessment, what is my right in this situation?
Thanks

Hi, unfortunately, for people having frequent seizures there can be a risk of injury during a seizure. That’s why some people with epilepsy will be entitled to the Disability Living Allowance.

If you are going to ask for a revisions or appeals against the DLA decision, you may wish to look at our safety information. We also have a guide to help people with epilepsy wishing to claim the DLA. Although it’s aimed at helping people applying for the DLA, it may also be helpful for revisions or appeals against the DLA decision. If you wish to receive a copy, you can order it from our shop, or by emailing or phoning the Epilepsy Helpline. Our contact details are helpline@epilepsy.org.uk and freephone 0808 800 5050.

You may also wish to get help from the Citizens Advice Bureau who specialise in welfare benefits. They can provide more information about your eligibility to receive the DLA and help you to complete a revision request or appeal if needed. For details of your local branch, tel. 020 7833 2181.

If you think it will help to talk to someone on our helpline team regarding your epilepsy, please feel free to contact us. You can email or phone us using the above contact details.

Diane

Advice and Information Team

My partner Sadie had epilepsy she got it her teens after cracking her head open at a swimming pool in the time i new her our love grew with each day and we moved into a house near her parents with her 6 year old boy we lived there for a year but we had to move due to my work being so far away so looked for a house nearer to my work we fell in love when we viewed a house and wonted it so much we moved in and sadie new i wonted kids as she always said i was more a dad to her son then his real dad and sure anoth on the 1st of feb 2012 my little boy was born i will never forget the happiness on sadie's face and the tears of joy running down her face. sadie's epilepsy had been so well controlled for well over a year and i new she adored me so much and at times i felt i didn't deserve her and she was loving mother hood and was always glowing after giving birth to her new born son but on the 24th of feb 2012 i got up as normal got ready for work sadie had got up to just as was about to leave and id made her a cup of tea and kissed her goodbye she said she was feeling a bit funny i said just to sit down and drink your tea knowing her mother was only up stairs if there was problem as she was staying for the week so i left got to work was at work when i get a call from sadies dad saying i need to go home as sadie has had a fit i just thought it was just a fit and she will be ok in a few hours but went home anyway to make sure she was ok and as i got home seeing an ambulance and a fast responce car outside thought it was a bit much getting out the car and there saying i can't go inside just yet and started to explain sadie had stopped breathing but they had managed to get her breathing again the hospital done everything they could but on the 26th feb 2012 they said there was nothing could be done death cert saying unexpected death so im now trying to bring 2 wonderful boys up and people say what a great job im doing but it means nothing without sadie with me i miss her so iv written this with tears pouring down my face but just had to write it to get it out there.

HI, I HAVE SUFFERED FROM EPILEPSY SINCE 2007 AND READING WHAT THE WEBSITE HAS PUT ON HERE HAS CERTAINLY SURPRISED ME WITH SOME OF THE THINGS THEY HAVE PUT ON. I LOSE CONCIOUSNESS SOMETIMES BUT NOT ALWAYS. I HAVE ALSO STARTED GETTING REALLY HOT FLUSHES (DON'T KNOW IF THEY HAVE ANYTHING TO DO WITH EPILEPSY) ALL I CAN SAY IS THANK YOU TO THE WEBSITE. VERY MUCH AN EYE OPENER.

Hi I'm 24 and have had photosensitive epilepsy since I was 16. I suffer from grand mal ,tonic clonic siezures. The before and after effects are the worst and always worries me that something bad will happen to me. Although I havnt had a fit in 3 years I normally go unconsious foam at the mouth an blue in the face. The pain after is so bad and my headaches are the worst. I constantly moan about my epilepsy because even though its been a while since my last fit I am petrified I will take another more so if I'm alone as I live far away from my family and can't always be with my patner. I feel at my worst when I have had alcohol and lack of sleep but under the impression that people think I'm over the top. I also suffer from agraphobia wich when I panic I feel I'm going to take a fit so tend to flee from the situation or try to avoid it completely I feel its taking over my life and no one seems to understand. Its sounds silly but wish my patner could seem me take a fit so she could understand

I will never forget the day my mom called me to give me the new that my 42 uncle had passed away so unexpectedly. It was June 7 2012. My grandma found him in his room since he lived with her. She was wondering the next day why he had not come downstairs to eat so she called out to him. No answer. She went upstairs because she knew he had these epileptic seizures, and then she found him. She blames herself for not having found him sooner but it is not her fault. God decided that it was the day to take him we all don't understand why. Till this day I feel it isn't fair, just to trust in god he knows why he does things and shortly after my uncle passed I find out that I am pregnant. I feel like god always takes something away and gives something back even if it is the most painful. God bless everyone and sorry for your lost ones!

Hello. My little boy is 2 and a half and today he had his 4th seizure. I wasn't expecting it. I was kneeling on the floor as we were playing with play dough and he suddenly made that funny sound and went rigid and fell down. He was absent for a few seconds then started curling inwards and went grey. He was on day 2 of Epilim and his previous 3 seizures had been when he was sitting/ lying down and was dropping off to sleep. (1 status epilepticus lasting over an hour, 1 tonic clonic lasting less than 5 mins and and 1 tonic clonic lasting 5 mins)This was just after lunch. His post dictal phase lasted over 2 hours. Up until now I have felt really positive but today I am frightened that he has a dreadful syndrome and I might lose him. He is so clever and funny and loving. I don't want to lose him. How likely is it that he has Dravets or something equally degenerative and horrible. Who can give me a prognosis about my little boy?

Hi. It can be really distressing to see your child having a seizure, especially when he is so young. Epilepsy medicine takes about two weeks to get into your system. And then it may take a while to get the right dose of the medicine. So it is very early days with regard to how well his Epilim will work.

Certainly some of the syndromes do make for very difficult reading. But the possibility of your son having Dravets for example, is one or two in every 500 children with epilepsy. And only the milder syndromes are a little more common. By milder I particularly mean syndromes in which it is possible for a child to get seizure control, and not necessarily be affected long term in any other way.

Meanwhile, I wonder if there is an epilepsy nurse you can talk to, before your next appointment with a specialist ? If there isn’t, and you are continuing to feel anxious, it may be useful to talk to your family doctor. You are also very welcome to ring our Freephone Epilepsy Helpline.

I really hope things improve for you and your boy very soon.

Cherry
Advice and Information Team

More information on children with epilepsy
More information on epilepsy medicine
More information on the Epilepsy Helpline

I'll never forget that night my mum passed away, I was in bed as I had school in the morning. My mum and dad were still up and I was woken up but the sound of my mum, it sounded as if she was crying. But I was wrong, she was in the middle of having a grand mal seizure, my dad managed to get her to their room and into bed to try and sleep it off when the fitting calmed down, then all of a sudden my mum started to littrely rolled down the bed, my dad (bless his heart) tried his best to keep her from falling off the bed and hurting herself.
My dad had no option but to gently let her go on the floor. I came back out my room as I heard my dad on the phone to emergency out of hours number. I went into my parents room to my mum in the recovery position. I sat on the bed looking down at my mum, I heard my dad shouting through to me to talk to my mum, but I was too upset and scared to even utter a word. I was only thirteen at the time, I have seen my mum have seizures before but never seen her take one that bad that night.
Once the paramedics came, they tried a couple of times to get her back to life, but failed. So they pronounced her dead. She was 46, just a month shy of turning 47.
I'm not a deeply religious person, but I know mum you looking down on me going that's my little girl. I know your not here in person with me, but you'll always be with me in spirit. R. I. P. mum 1954 - 2001

My husband,Richard age 72, died suddenly last Thursday 6 December 2012 and the cause of death has been put down as SUDEP. He had not had a fit for three years and thought that the. epilepsy, which was the gran mal, which he had since a teenager, was over. Richard would always have known about this sudden death risk all his life but never in Orur 40 year marriage did he tell me. I'm so sad I did.not know this. God Bless and keep you Richard. Xx

After reading all these comments it has been a real eye opener. I have temporal lobe epilepsy and had my first seizer when I was 15 years old. Before then I used to have petit mal for years. To be honesty the petit mal were worst for me then the seizer because you’re still conscious and don’t know what’s going on. After a seizer it’s like having a massive hangover, I always bite my tough which hurts a lot and every bone in my body hurts but I know alot of people have to go through worse things and I respected them for that.

It took me a long time to get diagnose because the doctors told me it was just hormones and that I would grow out of it and they didn’t want to rush putting me on medication. Also because I was between seeing a children’s specialised and an adult specialised they lost a lot of my information and didn’t realise how many seizers I was having. I really wanted to say thanks to my mum and dad because they were the ones who kept pushing me to go back to the doctors and having to watch me have seizers but not knowing what to do. It was really hard because when I went to one doctor she said I needed to stop coming and get on with my life but I was still having seizers and petit mal’s and didn’t know how to get on with my life.

I finally went on medication when I was 17 and after trying different things have been able to get the seizers under control. I haven’t had a seizer awake for a year and a half but still have them in my sleep about every 3months. Reading what I have today has really shocked me because I always thought it was people who have seizers every week who are at risk. I have never let epilepsy stop me from what I want to do and now im 22 years old and I am on a holiday working visa is New Zealand and plan to go to Australia after my visa runs out. I have found that when I have seizers in my sleep in the hostels people have been really helpful and there haven’t been any problems. Also I was on lamotrigine when in England but they don’t have the same thing over here so put me on some other medication which is the same kind of thing but it seems to be working alot better than the other medication. I still have seizers in my sleep and the doctor that I spoke to doesn’t think they will stop but at least I don’t have them awake anymore so I can get on with my life and see the world.

My heart goes out to anyone who has lost a family or friend from epilepsy and I really respect people writing about it. I guess you have to live life to the full and it looks like everyone who has written about a person has had a great life before and never let epilepsy stop them from doing what they want in life.

Heartbroken writing this. My dad died unexpectedly on 6th December 2012 of SUDEP. He was 72. Fitter than anyone I know. Never drank and never smoked. He will have known about this risk yet never said a word to any of us. Thought he would live forever. I think more needs to be done to make people aware of this as I'm sure people may view epileptic sufferers lives a little differently and make each moment count given you literally never know the moment that they may be struck down with this. Rest in Peace dad, missing you more every day xx

My Son died in his cell at Exeter prison he was found unresponsive at 7am on the Thursday morning he was on hourly checks as he had a seizure earlier in the day i am not happy with the surrounding circumstances the inquest was inconclusive, they have kept his brain for analysis so have not had results as yet but reading about sudep is making me think this could have happened to him i am devasted and there is an ongoing investigation by the ombudsman because i beleive he should not have been left on his own i am also unsure whether he was given medication because his fits were rare and caused due to withdrawing off drugs and being refused medication...

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