Sudden Unexpected Death in Epilepsy – SUDEP

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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.

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 5 times increase in risk.
  • the SUDEP rate in people with very frequent seizures has been estimated to be approximately 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 may 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, drinking excessive alcohol.

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.

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 discuss with your child’s clinician. The risk increases if the type of epilepsy is more complex.

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 to be a useful 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 SUDEP. Some people advocate for the use of special pillows to allow better airflow around the face. Nevertheless, using such a pillow cannot guarantee the safety of a person having nocturnal seizures. The use of such pillows is a personal choice.

Read more about individual devices on our Epilepsy Products page or contact Epilepsy Action Australia to speak with a Service Consultant or Specialist Epilepsy Nurse

I have lost someone to SUDEP. 

Epilepsy Action Australia offers support and information to families and friends who have lost a loved one due to SUDEP or other epilepsy-related death. Please do not hesitate to make contact with us here. You may like to help further research into Epilepsy-related deaths and SUDEP by sharing information about the loss of your loved one. The Epilepsy Deaths Register is an international register that gathers information from families, friends and clinicians to build a holistic picture of the circumstances around your loss to help educate others about epilepsy-related deaths. For more information click here.

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

The resource SUDEP Global Conversation contains a collection of key research on SUDEP, summarised into quick easy to read extracts, as well as highlighting families stories of those affected by SUDEP. Click here to read more on the Global Conversation and here for SUDEP Research Updates.

 

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