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Epilepsy-related deaths and SUDEP

Having epilepsy comes with certain risks. Although it rarely happens, it’s important to know about the risk of dying from epilepsy. On this page we talk about why epilepsy can sometimes be a cause of death. Most important, we talk about ways to reduce your risk.

If someone you know with epilepsy has died, we also have information about where to get support.

How many people die from epilepsy, and why do they die?

Every year in the UK, around 1,000 people die from causes related to epilepsy. Some people die during seizures because of a condition called status epilepticus, or as a result of an accident or drowning. Some people with epilepsy die due to suicide. We talk more about these risks, and how to reduce them, further down this page.

In some cases there’s no clear reason why a person with epilepsy has died. When this happens, it’s called sudden unexpected death in epilepsy (SUDEP).

What causes SUDEP?

Evidence shows that SUDEP is connected with seizures, particularly tonic-clonic seizures. No-one knows the exact cause and there may be no single explanation. However, it is thought that a seizure may sometimes lead to changes in the person’s heartrate or breathing. This could cause the person to stop breathing or their heart to stop beating.

I have epilepsy. Am I at risk of SUDEP?

SUDEP is rare, affecting around 1 in every 1,000 adults with epilepsy each year. This figure is for people with epilepsy in general. Your individual level of risk will depend on what type of seizures you have and how well-controlled they are. No one can say exactly who will be affected by SUDEP, but research has shown there are some things that can put you at increased risk:

Tonic-clonic seizures

The biggest risk factor for SUDEP is having uncontrolled tonic-clonic seizures. The more frequent your seizures, the more you are at risk of SUDEP.

Sleep seizures

SUDEP often happens at night. This suggests that you may be at more risk of SUDEP if you have seizures during sleep.

Not taking epilepsy medicine regularly

There’s some evidence that people who don’t take their epilepsy medicine regularly, as prescribed by their doctor, have an increased risk of SUDEP.

What if I don’t have tonic-clonic seizures, am I still at risk?

If you have other types of seizure, for example focal or myoclonic seizures, your risk of SUDEP is much lower than someone who has frequent tonic-clonic seizures. However, if you take epilepsy medicine to control your seizures, it’s important to keep taking it as prescribed. This is because for some people, not taking their medicine could put them at risk of having tonic-clonic seizures. If you aren’t taking your medicine because it causes side-effects, talk to your epilepsy specialist so the medicine can be adjusted or changed.

Is my child at risk of SUDEP?

SUDEP is less common in children than in adults. It’s estimated that each year, for every 4,500 children aged 17 and under with epilepsy, one will die from SUDEP. This figure is for children with epilepsy in general, and some children will be more at risk than others. We don’t know as much about SUDEP risk in children as we do for adults. However, a recent review of studies into SUDEP in children suggested that risk factors for children include:

  • Having uncontrolled tonic-clonic seizures, especially at night
  • Having a type of genetic epilepsy that’s difficult to control
  • Having other health problems, especially breathing or heart problems

To find out if your child is likely to be at increased risk of SUDEP, speak to their epilepsy specialist. If the specialist says your child is at increased risk, they should also talk to you about ways to reduce the risk.

What can I do to reduce my risk of SUDEP?

The most effective way to reduce your risk of SUDEP is to have as few seizures as possible, especially if you have tonic-clonic seizures. Having fewer seizures will also reduce your risk of death or injury from status epilepticus or accidents.

Here are some suggestions to help you have as few seizures as possible:

  • Take your epilepsy medicines every day, exactly as they’ve been prescribed. If you don’t like your medicine or have side-effects, talk to your epilepsy specialist so they can make changes
  • Find out in advance what to do if you miss a dose of medicine, or have vomiting or diarrhoea after taking it
  • Try to avoid situations which may trigger your seizures. Common triggers include missing a dose of epilepsy medicines, lack of sleep, stress and drinking too much alcohol
  • If your seizures are not fully controlled, 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

Things to consider if you have seizures in your sleep

In addition to taking steps to reduce your seizures, there are some extra things you may want to consider if you have seizures in your sleep:

Living and sleeping arrangements

There is evidence that having someone in your bedroom, who would be able to help you if you have a seizure, reduces the risk of SUDEP. So this is something to consider when making decisions about your sleeping and living arrangements.

Alarms and monitors

Talk to your epilepsy specialist or epilepsy nurse about using a seizure alarm or monitor. These can alert someone that you are having a seizure in the night, so they can help you, or if necessary call an ambulance. At the moment there is not enough evidence to say if using a seizure alarm or monitor can prevent SUDEP.

Sleeping on your back

Many people who died from SUDEP were found lying on their front. This has led some researchers to say that sleeping on your back may reduce the risk of SUDEP. But other researchers say there’s not enough evidence to prove that sleeping on your back reduces the risk.

Safety pillows

Some people choose to use a safety pillow. They have small holes that may help you breath more easily if you are lying face down when having a seizure. However, there hasn’t been any research to show if safety pillows reduce the risk of SUDEP.

Other causes of epilepsy-related death

Although it may feel worrying, it’s important to know about all the possible causes of epilepsy-related death. Knowing about the risks means you can take steps to reduce your risk and keep yourself as safe as possible.

Status epilepticus

Status epilepticus is when a seizure or series of seizures lasts too long and doesn’t stop on its own. It can happen with any type of seizure, but convulsive (tonic-clonic) status epilepticus is the most dangerous and can sometimes be a cause of death.

Read our information about status epilepticus and how to reduce your risk.

Accidents, injuries and drowning

Having seizures, especially if they affect your awareness or leave you feeling confused, can put you at risks of accidents, injuries and drowning. The most effective way to reduce your risk is to do everything you can to reduce the number of seizures you have. But there are also safety measures you can put in place to protect yourself.

Read our safety advice for people with epilepsy to find out more about ways to reduce your risk.

Suicide

People with epilepsy are at increased risk of suicide compared to people without epilepsy. This may be because people with epilepsy are at increased risk of mental health problems such as depression. For some people this can lead to thoughts of suicide. The organisation that regulates medicines in the UK has warned that rarely, epilepsy medicines may be associated with a small increased risk of suicidal thoughts and behaviour.

If you are feeling depressed or feeling like you want to die, talking to someone is the first and most important step in getting help. You could talk to your GP, epilepsy specialist nurse or epilepsy specialist.

If you don’t want to talk to a medical person, or you need someone to talk to when there is no medical person available, try the Samaritans. They are on the end of the phone 24 hours a day. Their phone number is 116 123.

Rethink Mental Illness has advice for people having suicidal thoughts, including useful contacts and how to get support.

If you are worried about someone who may be having suicidal thoughts, see the Samaritans tips on having a difficult conversation. Rethink Mental Illness also has advice on how to support someone having suicidal thoughts.

Let us know your thoughts about epilepsy-related death

Epilepsy Action is working on a project to ensure that people with epilepsy understand the risk of epilepsy-related deaths. Please help us by sharing your views in our survey.

See this information with references

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: 
F006.06

Epilepsy Action would like to thank Dr Heather Angus-Leppan, consultant neurologist and epilepsy lead, Royal Free London NHS Foundation Trust, for her contribution to this information.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated August 2019
    To be reviewed August 2022

Comments: read the 5 comments or add yours

Comments

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

I lost my sister nearly 2 years ago on the 30th of December x she was 29 and had only had epilepsy for 7 years. They just couldn't control her seizures and in the end it took her life. I miss her every day

Submitted by Jennifer on

Wish cameron boyce had gotten the help he needed..RIP sweet soul

Submitted by nikk on

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