Epilepsy, Risk & SUDEP

SUDEP is more common than SIDS, but far fewer people know about it.

A leading risk factor for SUDEP is having tonic clonic seizures and this risk is likely to increase if the seizures happen at night or when asleep, particularly if you live or sleep alone.

People with absence or myoclonic seizures are not known to have an increased risk for SUDEP. However, these seizure types can sometimes lead to tonic clonic seizures if medication isn’t taken as prescribed.

There are some recognised risk factors and some suggested risk factors for SUDEP.

The main risk factors are:

• Tonic clonic seizures – the risk increases with the number of seizures experienced
• Tonic clonic seizures during sleep

Although the evidence is low, other suggested risk factors may include

• Sleeping alone
• Not taking medication as prescribed or medication changes
• A history of seizure related injury
• A history of status epilepticus and/or prolonged seizures
• Alcohol or substance abuse
• Presence of intellectual disability
• Also having depression or other psychiatric illness
• Pregnancy
• The person has had epilepsy for more than 15 years or seizures begun at less than 16 years of age
• The person is male gender, aged 20-40 years

Although SUDEP is more common in people with frequent seizures it has also occurred in people who have had very few seizures.

It is important you discuss your risks and concerns with your doctor who can help assess your risk and discuss steps to reduce them. This can be done using the SUDEP and Seizure Safety Checklist

Of course, seizure risks can be lessened. The most important step is to try to control seizures or at least reduce how often they happen. There is plenty of safety information on our website with ideas to reduce your risk of injury.

Although 1 in 3 people with epilepsy continue to have seizures, a few actions can help reduce risks such as seeing an epilepsy specialist, taking medication as prescribed and discussing a treatment review or changes.  Sometimes other treatment options may be possible such as surgery or vagus nerve stimulation therapy, if they are suitable for your type of epilepsy.

Lifestyle choices can also influence risk. Have a look at our self-management factsheet to help with lifestyle choices.

To help raise awareness and understanding of SUDEP and other epilepsy-related risks, Epilepsy Action Australia offers a helpful tool: the SUDEP and Seizure Safety Checklist.

Originally launched in 2019, this was Australia’s first clinical resource designed to support meaningful conversations between healthcare professionals and people living with epilepsy. It helps identify and monitor individual risk factors in a simple, structured way and to help develop a plan to reduce modifiable risks.

This SUDEP Action Day, 2025, we’re excited to announce the launch of a new paediatric version of the Checklist, specially designed for children and young people under 16 years of age.

The Checklist is used during a short 10-minute consultation and is based on the latest research into epilepsy-related risks, including premature death. It provides a practical way to talk about safety and supports informed decision-making.

The original Checklists were developed in the UK through a collaboration between SUDEP Action UK and the Cornwall Partnership NHS Foundation Trust, with input from leading experts. Thanks to a strong partnership between SUDEP Action and Epilepsy Action Australia, this valuable tool is now available here in Australia.

What is it?

It came about after a large UK study over 9 years showed that 80% of people with epilepsy who died suddenly had not been in contact with specialist services in the year prior, and 90% had a worsening of seizures in the 3-6 months prior to the death. One half had a record of alcohol misuse, and a quarter had been taking drugs to treat depression or anxiety. This highlighted the fact that there may be modifiable risk factors that can be acted upon to avoid SUDEP.

A common theme was the lack of awareness and the underestimation of risk, indicating that risk assessment and risk management are fundamental in reducing avoidable deaths.

Professor Ingrid Scheffer AO, Chair of Paediatric Neurology Research, University of Melbourne said, “SUDEP is the most devastating complication of epilepsy where families lose a loved one with epilepsy out of the blue. Usually, the patient passes away unexpectedly overnight. We know that better seizure control reduces the risk of SUDEP, so we need to strive to improve seizure control and not accept ongoing seizures because of the serious risk that SUDEP poses.”

“We do not understand why SUDEP occurs –this is the next important step in research. We are working hard to find the cause of SUDEP through research but need to invest more resources to solve this terrible problem. If we can find the cause, then we can work together to reduce the risk of SUDEP for people living with epilepsy,” said Professor Scheffer.

Risks associated with seizures need to be discussed, no matter what type of epilepsy you have. It is important to be informed and ask questions. This way you can understand your risk, learn how to stay healthy, work to control your seizures, and reduce your risk as much as you can.

If you’d like more information, guidance, or support, please reach out to Epilepsy Action Australia – we’re here to help you live more safely with epilepsy.