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 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 1000 people with epilepsy (1 in 4,500 children).

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.  
You can find out more about what SUDEP Action is doing to support research into SUDEP & Epilepsy risks on our Research pages.

Check out our country specific SUDEP statistics via the buttons below:

PDF iconSUDEP UK Infographic
 

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.

As a general group, people living with epilepsy are at a 1 in a 1000 risk of SUDEP per year. This risk varies depending on your seizures, for example:

  • 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?

The risk of SUDEP for children with epilepsy is lower than adults (approximately 1 in every 4,500 children with epilepsy), but it is something to be aware of and to discuss with your child’s clinician. The risk increases if the type of epilepsy is more complex eg: Dravet Syndrome. See our Childhood, Adolescence and Risk section for specific information and advice.

 

Can Safety Devices help?

There are a number of devices for night-time seizure monitoring that are now available for use in the home. They are designed to recognise that a seizure has occurred or that breathing has been disrupted, triggering an alarm so that assistance can be provided.

This is a rapidly developing area of research. Investigation into the development and the benefit of such monitors is ongoing and at this time there is no evidence to show that using an alarm or device can guarantee the safety of a person experiencing nocturnal seizures. However, some families have found monitors useful as part of a risk reduction plan. Speak to your clinician about whether a device is something that you might choose to use.

Because many epilepsy-related deaths occur overnight with people found lying face down there is speculation that this position may interfere with breathing and contribute to the deaths. However, the use of special pillows has not been proven to prevent death from suffocation or SUDEPSome people advocate for the use of special pillows to allow better airflow around the face. Neverless, using such a pillow cannot guarantee the safety of a person having nocturnal seizures. The use of these pillows is a personal choice.

Read more about individual devices on our Epilepsy Safety Devices page

 

Where can I find out more information about research on SUDEP?

Our resource, the SUDEP Global Conversation contains a collection of key research on SUDEP, summarised into easy-read chunks, as well as highlighting families stories of those affected by SUDEP. Click here to read our Top 10 recommended articles.

You can also find out more about research, including the research projects SUDEP Action has supported.

 

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.