What is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy
It’s when someone with epilepsy dies and no other cause of death can be found during the post-mortem. Many of those who die are often young and otherwise healthy.
Epilepsy safety
What causes SUDEP?
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Heart rhythm changes
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Brain function – seizures may suppress or interfere with the function of vital parts of the brain
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Breathing changes – a seizure may cause someone to have pauses in breathing. If these last too long, oxygen in the blood may reduce to dangerous levels
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Other causes – either from a combination of the above or as a result of factors not yet known
It is not known for sure, but it’s unlikely that there’s a single cause to explain all SUDEP deaths. Possible reasons it happens include:
Epilepsy safety
Can SUDEP be prevented?
Research has shown that actions can be taken to reduce risks for many people with epilepsy. Taking positives steps to reduce seizures as much as possible is the best defence against SUDEP and having regular epilepsy risk reviews is essential for knowing about risks. Assessing risk is something that needs to be done regularly. It’s therefore important to have open and ongoing discussions with epilepsy professionals to improve or maintain safety.
Epilepsy safety
What are the risk factors?
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Generalised tonic-clonic seizures. Risk increases with the number of convulsive seizures experienced.
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Seizures when sleeping or shortly after waking (sometimes known as nocturnal seizures).
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Not taking anti-seizure medication as prescribed.
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Seizures not controlled by medication (also known as treatment-resistant epilepsy).
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Changing lifestyle factors can increase risk and impact on routines and stress, for example, moving home, going to university or pregnancy.
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Other health conditions.
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Gender – SUDEP is more common in men, but women can still be at risk.
Anyone having seizures could be at risk of dying prematurely because of them. The frequency and severity of someone’s seizures is a key sign that they are at more risk. However, SUDEP also occurs in people who have infrequent seizures too. Research has identified many risk factors:
Another risk factor is how long someone has lived with epilepsy, and if it started at a young age (before 16) . Risk is higher in young adults. To learn more about risk and see how you can improve your epilepsy safety, download our free, award-winning EpSMon app.
How common is SUDEP?
24-28 times more likely
Sudden death is estimated to be nearly 24-28 times increased risk in young people with epilepsy compared to the general population.
Young adults
It disproportionately affects young adults, which may explain why epilepsy deaths are in the top 10 of all causes of premature mortality in the UK.
1 in 1,000 people per year
Recent studies estimate the incidence of SUDEP at about one death per 1,000 people with epilepsy, per year. Reported rates may be underestimated.
Rates of SUDEP in children is similar to adults
The risk of SUDEP in children is similar to rates for adults (1.2 deaths for every 1,000 children with epilepsy each year).
Epilepsy safety
What is the criteria for categorising a death as SUDEP?
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A person with epilepsy dies suddenly or unexpectedly.
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Death may be witnessed or unwitnessed.
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Death due to trauma, drowning and/or status epilepticus has been excluded.
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Post-mortem examination does not reveal a cause of death.
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These deaths most often occur at night or during sleep. Although there is often some evidence of a seizure before death, this is not always the case.
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When there isn’t a post-mortem, death may only be classified as ‘probable SUDEP’. Where a competing cause of death is present, death can be classified as ‘possible SUDEP’.
SUDEP is an appropriate description in the following circumstances:
Also see
Supporting children, their families and their health professionals
There are many different types of epilepsy
Learn how to reduce risks
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counsellors who have a special interest and understanding in sudden and traumatic death.
