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
- Status epilepticus
- 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
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 2016To be reviewed April 2019