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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 are an adult and have epilepsy, your risk is 1 in 1000. This means 1 person in 1000 will die, but 999 will not
  • If you are a child with epilepsy, your risk is 1 in 4500. This means that 1 child will die, but 4499 will not
  • If you have 3 or more generalised tonic-clonic seizures in a year, 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.


Code: 
F006.05

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 14 comments or add yours

Comments

Hi there, I lost my brother to SUDEP in August. He was 24 and always took his medication. The hardest thing for me is making sense of his death, I study medicine so something like SUDEP which has no apparent cause is really hard for me to comprehend. I also don't understand why we were never aware that SUDEP was a risk, I'd never even heard of it until we received his post-mortem results. I've read that SUDEP and cardiac arrest are related, is there more that we can do to detect risk factors in epilepsy patients. I can't even explain how much is troubles me that other families may have to go through what mine have this year.

Submitted by Grace Harker on

My nearly 8 yr old died from seizure while she was asleep. She had suffered these before but was saved. The last one she was not found in time and could not be revived. I had asked my doctor about some sort of alarm for night time before the fatal seizure and she said there was nothing. Now I read there is. It is not fool proof but I urge ever parent to do all they can. You may feel some comfort in knowing you tried everything.

Submitted by Deborah tobin on

My daughter passed away 5 weeks ago due to her Epilepsy- I didn't know about this - I wish I had ... very similar situation to yours,
I am so sorry for your loss x

Submitted by Rhona Rance on

I lost my beautiful (epileptic) son on the 26/10/2017 he was only 22. There was an autopsy that could find no cause of death, so the coroner has sent his heart (& slides?) for tests in London, we live in Kent, as a result we can’t lay him to rest until his heart is returned as we don’t want to send him on his next journey incomplete.
Does anyone know what they are looking for/ hoping to find by doing this? It is adding pain to an already horrendously heart breaking time for his mother, siblings and me. Ted(dad)

Submitted by Ted webster on

Dear Ted

I am so very sorry to hear of your loss.

The people who will be best placed to answer your questions are SUDEP Action. They specifically support people who have lost someone due to epilepsy. Their phone number is 01235 772850.

Our thoughts are with you and your family at this difficult time.

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry-Epilepsy... on

Glad I have looked into this it will help me if my wife ever has a fit. Knowledge is a great thing.

Submitted by David Simmonds on

4 years ago my sister died in her sleep ( she was 47) she had had epileptic seizures since she was 11.
3 months before she passed she had a Nasty fall ( from a seizure) deeply cutting the side of her head / temple , after the fall they changed her medication , from there on she experienced memory loss & daily headaches. I visited her 3 days before she died , she had no colour what so ever in her complexion ( she almost looked grey) and was slurring her words real bad ( like she was drunk).
She was found in her bed a few days after she died , post mortem showed she died of natural causes ( they could not find any other reason) .. we , as her family know it was SUDEP.
A year after she died her son 19 , & my son 19 both started having seizures ( & Were both diagnosed with epilepsy).
My son is adamant he is not having any in his sleep but I know he is as he’s changing his sheet more than a few times a week ( and telling me he spilt a drink).
He hates the fact he has epilepsy & is so depressed most of the time ( he also has ADHD with doesn’t help his down moments, he’s also admitted to feeling suicidal at times ) if I try to talk about it he gets so angry at me.
I want to help him but he just won’t let me. :(
It breaks my heart knowing that I could possibly lose him.
I have also lost other family members through SUDEP ( my cousin & my cousins granddaughter), my uncle ended his life because of his epilepsy, also my aunt hit her head on a radiator during a seizure & died.
All the family members with epilepsy (9 that I know of) are all on my mothers side of the family so obviously hereditary ( All of which started between 7 and late teens ) .. it’s very scary to know that they can just happen out of the blue.,
Im so Sorry this is so long , it’s just been nice to get it off my chest , I don’t usually talk about it ( or nobody wants to listen as they don’t understand) xx

Submitted by Tracie on

Dear Tracie

It’s understandable you need to express your feelings and concerns.

Losing so many family members to epilepsy must be making your son’s diagnosis more difficult to cope with. 

Everyone reacts differently when diagnosed with epilepsy. We often hear of people struggling to accept their epilepsy. As you are finding out, it’s not just difficult for the person, it can be difficult for those close to them. 

Knowing what to do or say when your son is feeling down or not willing to talk, is a difficult situation to be in. In most case people find it helpful to talk or contact people who understand what they are experiencing. Some people may reach this stage quickly, but some people may take a long time. It’s suggested coming to terms with a new diagnosis can come in stages, for example experiencing shock, anger, denial, understanding and then acceptance.

I can only suggest you do what is best for you until your son is ready. If you feel you need to learn about epilepsy, then do so. What you learn will then be very helpful when your son is ready. If things are getting to difficult, could you try explaining to your son how you are feeling? Sometimes the person can be so wrapped up in what they are experiencing, they don’t realise what affect its having on people close to them.

If you think it may help your son (and nephew) to talk to others with epilepsy or to someone who doesn’t know him, we have different ways to help with this. We are on facebook, twitter and we have an online forum.

There is also the epilepsy social network and chat room for young people with epilepsy. It’s called the TEA room (Teenage epilepsy Agenda) and it’s for young people between 13 and 19 years old. The Samaritan could also be a good contact for your son, as they are open 24 hours.

Dealing with the emotions felt with any bereavement can be difficult. Some people find bereavement counselling helpful. If you think this may help you, you could contact Cruise Bereavement. As epilepsy is a major part in most of your experiences of bereavement you could also talk to SUDEP Action

Finally you or your son can always talk to our helpline team. The Epilepsy Action Helpline freephone 0808 800 5050 is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on

Thsnkyou for your reply Diane.
So , on Sunday , at around 3pm, I actually walked into my his bedroom ( due to hearing a strange noise) he was having a seizure in bed.
As far as I’m aware he hasn’t had a full on seizure for over 2 years (but he does have lots of absent seizures) even though I think he’s been having them in his sleep I can’t be 100% certain.
Anyway, after his Sunday episode , he was in a daze ( like he was constantly in absent seizure mode) , in & out of sleep , violently sick , and his head hurt so much he couldn’t move. He slept most of Sunday and woke 11am Monday ( feeling a lot better). He has always been fine after about 2 hours but this time was completely different.
Today he has said he feels like a new person, he feels so happy and everything seems different , taste, smell, even visually .. he has started to stutter a little which he hasn’t done in a good few years ( he use to stutter before he started having seizures but he seemed to stop suddenly) Also, he’s said that some words he can’t pronounce properly ( they come out all wrong ). He just smoked a cigarette and said it tastes like ice cream .. he seems to like the strange feelings he’s having , he finds it quite funny, but I’m a bit worried ( surely it’s not normal)?!!

Submitted by Tracie on

Hi Tracie

I’m sorry to hear your son had a seizure on Sunday. It must be such a worry for you. 

If the symptoms are not connected to his ADHD it would be best to talk to your family GP, his epilepsy specialist or if he has one, his epilepsy nurse. It could be related to epilepsy but you need a medical diagnosis.

Regards 

Diane Wallace

Advice and Information Services Officer

Epilepsy Action

Submitted by rich on

All these stories are so touching. My seizures have been happening since I was 6.
I have a hard time with the side affects of the medicine. I try to get the doctor to lessen them.
They have always told me I could have a seizure that doesn't stop.
I have never believed them.
Until reading this. I'm 63.
Thank you so much.
Again my thoughts to everyone who wrote.

Submitted by Gina Montminy on

my son age 24 died on 8th march 2018...i am heartbroken, he had epilepsy since a young child, as baby had febrile convulsions from age 6 months old.
i never knew of sudden death...he has a recent medication change from tegratol to lamotrogine and because of a recent eeg his brain waves were very active ..his specialist gave him another pill to take 1 a night for 1 week, to dampen his brain waves down...1 tablet at night before bed he had it tuesday night had a fit and next night also had a fit and the third night had a small fit and died...i am having an autopsy done ..my sons funeral is on wednesday our family is shocked people need to be aware of this sudden death

Submitted by beverley jones on

Hi Beverley

I am so sorry to hear about the death of your son. It must be a dreadful shock for you. And yes we really agree that more people need to know about this.

Hopefully you know about SUDEP Action now. They have a dual role of campaigning around SUDEP. And they also have a helpline for people in your situation. The number is 011235 772850: https://sudep.org/

I very much hope the funeral is what you need it to be.

Kind regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Our beautiful daughter kennedy was first diagnosed with epilepsy in 2007 at the age of seven. She had 3 seizures in 24 hours. Her seizures seemed to happen while she was sleeping. We right away called out to God for help. Help to find the right doctors. Help for the proper diagnoses and for proper treatment. God answered our prayers almost immediatly. Within hours we were meeting with an epilepsy specialist. He seemed to know by her testing exactly what types of seizures she was having. Started her on her meds. They worked! Kennedy Hadn't had a seizure that we know of since 2007. However in the last few years kennedy had been having migrain headaches. We right away talked with her doctor about this. He prescribed a medication to help with the migraines and sure enough they seem to be a lot less often. Things seemed to be going great! Kennedy saw her docs regularly for check ups and testing. Each time all results were good. Docs seemed to have no concerns, nor did we. Kennedy was a bright student, did very well in school. Had a very busy life playing sports, working and voulentering at numerous events. Kennedy got her drivers license, graduated at age 17 and went on to collage..... if Someone didn't tell you that kennedy had epilepsy, you wouldn't know. Her life seemed no different than anyone else. As her mom I worried terribley the first few years after she had been diagnosed. As years passed I worried less. Complications from epilepsy weren't really a fear that we had anymore. On March 11 2018 our whole world was turned upside down when our beautiful daughter kennedy passed away unexpectedly in her sleep. See, we didn't think that SUDEP was something we had to worry about. Keendys seizures were controlled well by her medications. There were absolutely no warning signs that we could see. She seemed healthy and happy as ever when she went to bed that night. Our hearts are broken into a million pieces. We hope and pray that all parents with epileptic children read up on SUDEP. Ask your doctors about it. We thought we knew all we needed to know. We didn't think she was at risk💔

Submitted by Andie on

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