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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 February 2019
    To be reviewed April 2022

Comments: read the 4 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

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