This information is for people affected by or concerned about sudden unexpected death in epilepsy (SUDEP), including parents and carers. On this page we talk about who is at risk of SUDEP, what causes it, the symptoms, how you can reduce your risk and where to get bereavement support.
Use this page as a general guide and speak to a health professional for more information and support
What is SUDEP?
SUDEP is the term used when someone with epilepsy dies suddenly and unexpectedly for no known reason, during or after a seizure. Often people who die from SUDEP are young and otherwise healthy.
It’s important to remember that SUDEP is rare – it affects around 1 in 1,000 people with epilepsy each year. However, if you’re worried about it and want to talk more about your risk, contact your doctor. They are there to support and reassure you.
Is my child at risk of SUDEP?
Research suggests that the risk of SUDEP is similar for both children and adults with epilepsy. The following risk factors may increase the chances of children with epilepsy having SUDEP:
The risk factors for SUDEP in children include:
- Having uncontrolled tonic-clonic seizures, especially at night
- Having a type of genetic epilepsy that’s difficult to control
- not taking anti-seizure medication regularly or correctly.
If you are concerned about your child’s risk of SUDEP, speak to their epilepsy specialist.
Other risk factors for SUDEP
Other risk factors for epilepsy-related death, including SUDEP, include:
- having seizures from a young age
- living with epilepsy for many years
- being a male
- having seizures during sleep
- for some women, the risk of seizures may be greater at times during their menstrual cycle.
If you have any of these risk factors, it does not necessarily mean that SUDEP will affect you. Remember, SUDEP is rare. But if you’re concerned about your risk or would like to talk more about any of the risk factors we have listed here, talk to your doctor. They will explain more about your risk based on your or your child’s individual circumstances.
SUDEP and epileptic seizures
Your risk of SUDEP is believed to increase if you have focal to bilateral tonic-clonic seizures or generalised tonic-clonic seizures.
Research shows that you have a higher risk of SUDEP if you have multiple generalised tonic-clonic seizures a year compared to people who have less or do not have generalised tonic-clonic seizures at all. If you have very frequent, uncontrolled seizures, the risk of SUDEP also increases.
People who have absence or myoclonic seizures are not thought to be at an increased risk of having SUDEP.
However, it is important to remember that although SUDEP is more common in people who have frequent seizures, it has also been known in people who have very few seizures.
How can I reduce the risk of SUDEP?
If you have been diagnosed with epilepsy there are some things you can do to help reduce the risk of SUDEP. These include:
- Taking your prescribed anti-seizure medication regularly and correctly to help keep seizures under control. This is because uncontrolled seizures increase the risk of epilepsy-related death.
- Knowing what to do if you miss a dose of your regular anti-seizure medication, or vomit or have diarrhoea after taking a dose. Always talk to your doctor or epilepsy specialist if you’re not sure how to take your medication correctly. Find out more about anti-seizure medications and anti-seizure medications for girls and young women.
- Explaining to friends and family what to do if you have a seizure so they understand how they can help you.
- Avoiding specific seizure triggers, such as stress, lack of sleep, missing meals, drinking too much alcohol or taking drugs.
- Having regular medical check-ups with a health professional to talk about your risks and any changes to your health. And creating a care plan to help you stay safe.
- Between medical check-ups, using diaries, medication reminders and apps to help you keep track of your epilepsy and stay in control.
- If your seizures are not fully controlled, ask to be referred to an epilepsy specialist for a review of your condition and treatment. They can help you stick to your medication.
- Being aware of possible risks at night – you may want to try:
- Introducing or increasing night-time supervision, for example, if you’re a parent or carer of a child with epilepsy, you may want to use a night monitor. This may be particularly helpful if your child has a history of having seizures during their sleep or is at higher risk of epilepsy-related death.
- Sleeping on your back or side may help to prevent SUDEP.
Support from healthcare professionals
When you are diagnosed with epilepsy, healthcare professionals involved in your care should discuss the risk of epilepsy-related death, including SUDEP. They should talk to you about the support available and give you information about your risk.
You can contact your doctor if they haven’t mentioned SUDEP to you, or if you’re worried about your or your child’s risk. They will help to answer any questions you have.
Managing your grief if you’ve been affected by SUDEP
If someone close to you has died unexpectedly due to epilepsy, it can be very difficult to come to terms with what has happened. This is normal and everyone manages grief in different ways.
If you’re struggling with grief, contact your doctor. They will be able to offer you support or refer you to specialist bereavement support services in your local area.
You may find it helpful to join a bereavement support group, either in-person or online. Talking to others who understand what you’re going through can be helpful. Use the list below to contact other organisations who have specialist information and support services.
Other useful organisations
SUDEP Action
SUDEP Action raises awareness of epilepsy risks and epilepsy-related deaths, including SUDEP.
Support line: 01235 772850
SUDEP Action Scotland: 0131 516 7987
SUDEP Action’s other resources include:
- SUDEP and Seizure Safety Checklist, a free evidence-based tool to support clinicians when discussing risk with people with epilepsy.
- Epilepsy Safety Devices – information on different types of safety devices.
- Taking Action Against Risk – resources and tools to reduce risk.
Epilepsy Action
A charity that provides support and information to people affected by epilepsy, including safety advice for people living with epilepsy, including ‘Safety in the bedroom’ and ‘Doing a safety check’.
Cruse Bereavement Support
An organisation that supports anyone affected by grief.
Helpline: 0808 808 1677
The Compassionate Friends
An organisation that supports bereaved parents and their families.
Helpline: 0345 123 2304
