This page covers sudden unexpected death in epilepsy (SUDEP), including the number of adults and children affected each year, the risks and how to reduce them for children and young people.
What is SUDEP?
SUDEP is the term used when someone with epilepsy dies suddenly and prematurely for no known reason, other than SUDEP.
It usually occurs at night in bed when there are no witnesses. There may be signs of a seizure having taken place, such as the person being found face down on a wet pillow. But this is not always the case.
How many people does SUDEP affect?
SUDEP affects around 1 in 1,000 people with epilepsy each year.
Each year in the UK, more than 1,000 people die from epilepsy-related causes, including accidents, drowning, status epilepticus and suicide.
It is thought that up to half of these epilepsy-related deaths are caused by SUDEP.
Is my child at risk of SUDEP?
It was once thought that SUDEP was less common in children. Research now suggests the risk for children is similar to that for adults: 1.2 deaths each year for every 1,000 children with epilepsy.
The risk factors for SUDEP in children include:
- Uncontrolled tonic-clonic seizures, especially at night
- Having a type of genetic epilepsy that’s difficult to control
- Other health problems, particularly breathing or heart problems
If you are concerned about your child’s risk of SUDEP, speak to their epilepsy specialist.
SUDEP, epilepsy types and seizures
This risk of SUDEP for both adults and children increases with more complex, rare forms of epilepsy.
People with absence or myoclonic seizures are not known to be at increased risk of SUDEP.
Research has shown, however, that the risk of SUDEP increases in people who have tonic-clonic seizures.
The risk is greater if you have tonic-clonic seizures at night or when asleep.
Research also shows that you have five times the risk of SUDEP if you have one or two generalised tonic-clonic seizures a year compared to people who do not have generalised tonic-clonic seizures.
If you have three or more generalised tonic-clonic seizures a year, you can be 15 times more at risk of SUDEP compared to people who do not have generalised tonic-clonic seizures.
If you have very frequent, uncontrolled seizures, the risk of SUDEP can be between 1 in 50 and 1 in 100.
It is important to remember, however, that though more common in people who have frequent seizures, SUDEP has also been known in people with very few seizures.
Other risk factors for SUDEP?
Other risk factors for epilepsy-related death, including SUDEP, include:
- Not taking medication regularly as prescribed
- Changes to medication
- Alcohol and drug misuse
- Living alone
- Sleeping alone without supervision
- Depression or psychiatric illness
- Pregnancy
- Learning disability
- Not having regular epilepsy medical reviews
- Having had epilepsy for more than 15 years
- Epilepsy starting before 16 years of age
- Being male
- Being a younger adult
How can I reduce the risk of SUDEP?
The best ways to reduce risk are:
- Take anti-seizure medication as prescribed to minimise the number of seizures, as uncontrolled seizures increase the risk of epilepsy-related death, particularly for people with generalised tonic-clonic seizures or focal to bilateral tonic-clonic seizures
- Know what to do if you miss a dose of your regular anti-seizure medication, or vomit or have diarrhoea after taking a dose. Find out more about anti-seizure medications and anti-seizure medication, contraception and pregnancy
- Explain to friends and family what to do if you have a seizure
- Avoid specific seizure triggers, such as missing medication, stress, lack of sleep, skipping meals, alcohol and drugs
- Have regular medical reviews to discuss risks and any changes – and create a care plan to help you stay safe
- Between reviews, use diaries, medication reminders and apps to keep track of your epilepsy and stay in control
- If your seizures are not fully controlled, you should ask to be referred to an epilepsy specialist for a review of your condition and treatment
- For some women, the risk of seizures may be greater at times during their menstrual cycle; you should discuss this with your epilepsy specialist.
- Being aware of potential risks at night, you might take precautions such as:
- Safety pillows. Using safety pillows is a matter of personal choice but there is no evidence that they prevent death from SUDEP
- Alarms and monitors, for those who have seizures while sleeping and have been assessed to be at higher risk of epilepsy-related death. It’s important to remember that there is no evidence that alarms and other devices are a guarantee of safety for someone experiencing a seizure at night
- Sleeping on your back – many people with SUDEP were found lying on their front
- Think carefully about your living options if you're leaving home
- If you do live alone, consider shared accommodation and sleeping in a shared room and having a safety check plan (see "More information on SUDEP", Epilepsy Action, below)
Support from healthcare professionals
From the time of diagnosis of epilepsy, healthcare professionals should discuss with people with epilepsy, and their parents or carers, the risk of epilepsy-related death, including SUDEP.
With children and young children, this discussion should include:
- Ways of supporting them to understand the risks of epilepsy-related death, including SUDEP
- Discussing and agreeing on ways to reduce the risks
Healthcare professionals should discuss the risk of SUDEP with people who have seizures while sleeping, and if appropriate with their parents and carers.
They should provide information on minimising the risks of SUDEP, including taking anti-seizure medication as prescribed.
More information on SUDEP
SUDEP Action
sudep.org
SUDEP Action raises awareness of epilepsy risks and epilepsy-related deaths, including SUDEP.
The organisation is currently working with Young Epilepsy to develop a SUDEP and seizure safety checklist for children as part of its plan to develop risk information and services to support children, young people and their parents/carers.
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 aged 16 and over
- Epilepsy Safety Devices – information on different types of safety devices
- Taking Action Against Risk – resources and tools to reduce risk
Epilepsy Action
