Knowing about risks means you can take action against them.
In summary, the most steps you can take to reduce seizure related risks, injury or death are:
Get the best seizure control possible.
- Take your medication as prescribed
- Speak to your doctor if you are not happy with your current medication or side effects
- Regular reviews with your doctor
Be involved in managing your seizures
- Avoid any known seizure triggers for you
- Avoid drinking too much alcohol
- Know when your seizures are most likely to occur
- Get enough sleep
- Be healthy
- Manage stress
Make sure those close to you know what to do in case of a seizure
Go through the SUDEP and Safety Checklist with your doctor to help determine your risk.
The resources below may also help you live well with your epilepsy:
Brochures and Books – information for families and health professionals
- SUDEP Factsheet
- SUDEP – reducing your risk: Information and guidance for people with epilepsy
- SUDEP – explained: A short guide for the health professional
- SUDEP Global Conversation
Safety Devices – information about devices and tools available to support people with epilepsy
Clinical Information and Guidelines for Epilepsy – information for clinicians about how to diagnose, treat and manage epilepsy
- SUDEP and Seizure Safety Checklist for doctors (Australia)
- SIGN (Scotland)
- NICE (UK)
- ILAE Seizure Classification Summary
Other Supports – should you have specific questions in between visits to your clinician
- Epilepsy Action Australia – Speak to a Service Consultant or Specialist Epilepsy Nurse
- Epilepsy: In Memoriam Facebook community
- The Epilepsy Death Register – a single international point for families and clinicians to record epilepsy-related deaths
ThinkGP, an education platform for doctors, have developed a free, online module about Reducing the risk of SUDEP.
- Part 1 of this 2-hour module contains information about SUDEP and strategies for discussing the risks of SUDEP with patients and their families.
- In part 2 you will be asked to use the SUDEP and Seizure Safety Checklist*, to assess two people with epilepsy in your practice. By completing this module, participants will be eligible for 4 RACGP CPD points / 2 ACRRM PDP hours.
SUDEP ACTION DAY
Many people do not realise that epilepsy can be potentially life-threatening, and someone with epilepsy is three times more likely to die prematurely than someone without epilepsy. There are many reasons for this, including accidents and injury, drowning or suicide but the most common epilepsy-related cause of premature death is Sudden Unexpected Death in Epilepsy (SUDEP), which is the sudden, unexpected, death of a person with epilepsy, with or without evidence of a seizure and no other cause is found.
It is estimated that 50-100* Australians each year die from SUDEP and sadly, SUDEP often occurs in young, otherwise healthy individuals. Our thoughts are with those who have lost someone related to epilepsy, but we know thoughts aren’t enough.
SUDEP Action Day is October 23rd and is devoted to raising awareness around the world about SUDEP. Knowing about the risks means you can take action against them. By encouraging people to learn about it, and their individual or loved one’s risk, we hope to inspire action to reduce SUDEP risk and save lives.
If you live with epilepsy, ask your doctor about the SUDEP and Seizure Safety Checklist.
You can find more information on our website to give to your doctor, or simply email or call 1300 37 45 37 to make an appointment with one of our epilepsy nurses. Having regular conversations about epilepsy-related risks can help people living with epilepsy take positive actions that could save lives.