Unfortunately, in Australia, there are over 200 epilepsy- related deaths each year – but this figure is likely to be underestimated (AIHW 2019).
Some of these deaths are due to:
- accidents
- drowning
- seizure emergencies (status epilepticus)
- suicide
- SUDEP
More than half of these deaths are thought to be due to SUDEP, or Sudden Unexpected Death in Epilepsy.
It can be scary to think about the risk of death related to any health condition; however by understanding these risks, you can take positive actions to keep yourself or your family member as safe as possible.
Many epilepsy deaths are potentially avoidable – there are things you can do to reduce risks.
This section is to help inform you about potential risks, so you can make informed choices about how you manage safety.
Key risk factors for epilepsy related deaths:
The risk of SUDEP is highest in people with tonic clonic seizures but the below risk factors may increase the risk of epilepsy related deaths. They include:
- frequent tonic-clonic seizures
- nocturnal seizures (seizures during sleep) and sleeping alone
- medication changes
- not taking medication as prescribed
- alcohol or substance use
- depression or psychiatric illness
Research has shown the factors below are also linked to SUDEP:
- having had epilepsy for over 15 years
- epilepsy starting at a young age
- male gender
- younger adult age
Find out more about what steps can be taken to help reduce risk.
If someone has died
If you have lost someone to epilepsy we have a group Epilepsy: In Memoriam – you are not alone dedicated to those who have lost their lives to epilepsy, and to family and friends in need of comfort and strength
If you need to speak to someone please contact us on 1300 37 45 37 or email us to speak to an epilepsy nurse.
