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. The more frequent the tonic clonic seizures, the higher the risk.

People with absence or myoclonic seizures are not known to have an increased risk for SUDEP. However, people who have these seizures may be at risk for tonic-clonic seizures if they do not take medication as prescribed.

People who do not have tonic clonic seizures are still at risk of SUDEP.

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

The main risk factors are:

• Tonic clonic seizures
• Poorly controlled or frequent seizures
• Sleeping alone

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

• A history of seizure related injury
• A history of status epilepticus and/or prolonged seizures
• Seizures during sleep (nocturnal seizures)
• Not taking medication as prescribed
• Medication changes
• Alcohol or substance abuse
• Also having depression or other psychiatric illness
• Presence of intellectual disability
• Pregnancy
• Unclear seizure frequency or treatment history
• The person has had epilepsy for more than 15 years
• The seizures begin 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 get seizure control, 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 strive for seizure control, a few actions can help reduce risks such as: seeing an epilepsy specialist, taking medication as prescribed and discussing a treatment review or changes if needed.

Sometimes other treatment options may be possible such as surgery or vagus nerve stimulation therapy, if they are suitable for your particular type of epilepsy. See Taking Action Against Risk

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

SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy deaths worldwide. It occurs annually on the third Wednesday in October.

Not everyone with epilepsy is aware of, or told about SUDEP and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. Some health professionals worry that discussing these risks could frighten their patients. But these negative outcomes can be prevented for many people with epilepsy; and openly discussing these risks allows them to make informed choices about treatment and lifestyle and helps them take steps to reduce any risks.

People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

For SUDEP Action Day 2023 we want people to talk #MySafetyMatters

Remember, with information there’s conversation…!