SUDEP Action

Making every epilepsy death count
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Sudden Unexpected Death in Epilepsy - SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found

SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.

The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.

SUDEP occurs in approximately 1 per 1,000 people with epilepsy each year. Previously it was thought that SUDEP in children was less common than it was for adults (1 in 4,500), but research suggests that this number was understimated and that the risk of SUDEP happening to children with epilepsy is actually similar to what it is for adults (1.2 deaths for every 1,000 children with epilepsy each year). This risk increases for both adults and children if they have a more complex, rare form of epilepsy, and depending on the risk factors they may have because of their epilepsy.

Having active seizures can put you at risk of injury and death, and there are certain types of seizure which research has shown increase a person’s risk of SUDEP.

Much is already being done to try to understand what causes SUDEP, but more research is needed.  

What is my risk of SUDEP?

We don’t know what causes SUDEP to happen, or who will be affected.
But researchers have identified key risk factors that can increase risk of SUDEP – and in some cases, there are positive things that can be done to reduce risks.

  • People with absence or myoclonic seizures are not known to have an increased risk for SUDEP
  • The risk increases if you have generalised tonic-clonic seizures (GTCS), especially if they happen at night or when asleep.
  • As the number of GTCS increases, so does the risk. Research has found that compared to people without GTCS those with 1-2 seizures a year have a 5x increase in risk. Three or more seizures a year can increase risk up to 15 times.
  • The SUDEP rate in people with very frequent seizures has been estimated to be between 1 in 50 and 1 in 100
  • Although SUDEP is more common in people with frequent seizures it has also occurred in people who have had very few seizures.
Risk levels vary between people with epilepsy, and they can change over time; it is important you discuss your risks regularly with your clinician who can help you assess your own risks and put steps in place to reduce them. 

Your lifestyle and treatment choices are important. For example, you could be in a high-risk group but may have options to reduce that risk, e.g. successful epilepsy surgery. Or you may be at low risk but your treatment or lifestyle choices put you at greater risk, e.g. deciding to stop medication against advice, or drinking alcohol to excess.

Key risk factors for SUDEP:

There are known risk factors which increase the chance of death in people with epilepsy.  Many of these risk factors can change over time, or can be changed to improve seizure control and reduce risks. Click here for a summary of these risks. 

 

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THE BEST WAY TO LOWER YOUR RISK OF SUDEP IS BY ACHIEVING THE BEST SEIZURE FREEDOM FOR YOU

Can I change the risk of SUDEP?

Many Epilepsy risks can be reduced - the most important step you can take to avoid SUDEP is to minimise the number of seizures you have. There are positive steps you can take to help reduce your risks; Check out our Taking Action Against Risk pages for top tips and free resources to help.

 

What is the risk of SUDEP for Children with epilepsy?

new review published in the Developmental Medicine and Child Neurology journal has added weight to other study findings that SUDEP rates in children are higher than previously thought.
It was widely suggested that SUDEP affects 1 in 4,500 children each year (UK and beyond). However, this new paper, based on a study from Canada, claims the rates could be much higher – and comparable to SUDEP rates in adults (1.2 per 1,000 people per year).  

SUDEP is thought to be the highest cause of epilepsy-related death for both children and adults, though it is likely these figures are underestimated because not all SUDEP deaths are accurately recorded. This is why SUDEP Action’s bereavement team have a dedicated casework service to support bereaved families through the inquest process, so their loved one’s death is accurately recorded on the death certificate.  

I have lost someone to SUDEP - see our information section for anyone who has been bereaved by epilepsy. We support people who have been bereaved by ANY type of epilepsy death.