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 during sleep. There may be obvious signs a seizure has happened, though this isn’t always the case.
The cause of SUDEP is not yet clear. Researchers are investigating a range of possibilities such as the effect of seizures on breathing, the heart and arousal.
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 continuing.
What is my risk of SUDEP?
We don’t know exactly 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:
- The risk increases if you have tonic clonic seizures, especially if they happen at night or when asleep
- The more frequent the tonic clonic seizures, the higher the risk
- Although SUDEP is more common in people with frequent seizures it has also occurred in people who have had very few seizures.
- People with absence or myoclonic seizures are not known to have an increased risk for SUDEP
Risk levels vary between people with epilepsy, and they can change over time; it is important you discuss your risks and concerns with your doctor 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 have options to reduce that risk, such as surgery for epilepsy or improved medications. Or you may be at low risk but your treatment or lifestyle choices put you at greater risk, for instance deciding to make medication changes without speaking to your doctor or 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. But in summary they include having:
- having (active) tonic-clonic seizures
- nocturnal tonic-clonic seizures
- frequent seizures
- sleeping or living alone
Other factors that can also influence risk are:
- medication changes or missing medication
- seizures begin at a young age or the person has had epilepsy for more than 15 years
- males between 20-40 years
- drinking excessive alcohol or substance abuse
- depression or psychiatric illness
- intellectual disability
Less severe seizure types, such as absence, focal seizures or myoclonic seizures, are not proven to be associated with increased SUDEP risk. However, if you have these seizures and do not take your medication as prescribed, the you may be at risk for tonic-clonic seizures.
Therefore, medication adherence is important even when the person is not experiencing tonic-clonic seizures.
THE BEST WAY TO LOWER YOUR RISK OF SUDEP IS BY
TRYING TO GET THE BEST SEIZURE FREEDOM FOR YOU
Can I change the risk of SUDEP?
Many epilepsy risks can be lessened. The most important step you can take to avoid SUDEP is to try and reduce 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 doctor.
Risk factors are the same as for adults, and the risk increases if the type of epilepsy is more severe or complex.
Can safety devices help?
There are a number of devices and monitors for night-time seizure monitoring now available for use in the home. They are designed to recognise a seizure or changed breathing patterns or heart rate. There are various types of devices. If a seizure happens they trigger an alarm so that help – either a family, friend or emergency services – can be notified. There is no guarantee that these are 100% effective.
Monitors and alarms don’t guarantee safety or detection of all seizures, but they can provide peace of mind for some people.
Some families have found monitors to be a useful part of a risk reduction plan. Speak to your doctor or epilepsy nurse about whether a device is something that you might choose to use.
Because many epilepsy-related deaths often occur in bed during the night, there is an assumption that suffocation or breathing difficulties may contribute to the deaths. There are special pillows available, but they have not been proven to prevent death from suffocation or SUDEP. While these pillows do seem to allow more airflow, they cannot guarantee the safety of a person having nocturnal seizures. The use of such pillows is a personal choice.
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.
We also have a Facebook group dedicated to those who have lost their lives due to epilepsy, and, to their family and friends who need to find the comfort and strength to keep living. Epilepsy: In Memoriam – you are not alone
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 doctors 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.