Understanding SUDEP.Starting the conversation.
SUDEP can be difficult to talk about. Clear information can help you discuss your individual risk, care, and safety with your healthcare team.
What is SUDEP?
SUDEP means sudden unexpected death in epilepsy. It describes a sudden, unexpected death in someone with epilepsy when no other cause explains the death, such as an injury, drowning, or a prolonged seizure.
What do we know?
SUDEP is uncommon, but it is a serious risk. It often occurs during sleep. Researchers are studying how changes in breathing, heart rhythm, and brain function may contribute.
Risk is individual.
Frequent or uncontrolled seizures, particularly tonic-clonic seizures, are important risk factors. Seizures during sleep also matter. Your healthcare team can explain what is relevant to you or your child.
Focus on seizure care and a shared plan.
Improving seizure control is an important way to reduce SUDEP risk. These are useful areas to discuss with your healthcare team.
Medication & follow-up
Take medication as prescribed. Discuss side effects, missed doses, and any difficulty accessing treatment with your healthcare team. Do not stop or change medication without medical advice.
Seizures that continue
Tell your clinician if seizures continue or change. Ask whether an epilepsy specialist or other treatment options may help.
Sleep & seizure patterns
Keep a record of seizures and possible triggers. Discuss sleep, nighttime seizures, and any practical changes that could support your care.
People who can respond
Keep your seizure response plan current and help people close to you learn seizure first aid. Discuss nighttime support and the limitations of monitoring devices.
Questions worth asking.
- What does my seizure pattern mean for my SUDEP risk?
- What could improve my seizure control?
- What should I do if I miss medication or experience side effects?
- What should we consider for seizures during sleep?
- Would a monitoring device be appropriate, and what could it miss?
- What should my family or caregivers do during and after a seizure?
- For a child or teenager, how can we discuss SUDEP in an age-appropriate way?
Explore further at your own pace.
These organizations maintain information and resources about SUDEP. External links open in a new tab.
CDC: Understanding SUDEP
Read an overview of SUDEP, possible causes, risk factors, and conversations to have with your healthcare provider.
Seizure Care & SUDEP Risk
Explore information about seizure control, safety planning, and the limits of devices intended to alert others.
Leaflets & Downloads
Find information for people with epilepsy, parents, caregivers, healthcare professionals, and people affected by bereavement.
SUDEP information sheets.
Choose the information sheet that fits your situation. Open a PDF to read, save, print, or share.
For People with Epilepsy
Information for people living with epilepsy about SUDEP and questions to discuss with their healthcare team.
For Young Adults & Teens
An information sheet aimed at teenagers and young adults living with epilepsy.
For Parents & Caregivers
An information sheet for parents and caregivers of children with epilepsy.
For People Bereaved by Epilepsy
Information for people affected by an epilepsy-related death.
You do not have to navigate this alone.
There is no single way or timetable for grieving. You may want information, connection with others, or support closer to home. Explore these options when you feel ready.
Partners Against Mortality in Epilepsy
PAME shares bereavement resources and information about connecting with others affected by an epilepsy-related death. Check current participation arrangements directly.
Bereaved Families of Ontario
Explore peer support and regional affiliates for people experiencing grief. This is a general bereavement organization, rather than an epilepsy-specific service.
This page provides general information, not an individual risk assessment or medical advice. Discuss your circumstances with your healthcare team. Sources include the CDC, Epilepsy Foundation, and SUDEP Action, linked above. Information and links checked October 2026. External services have their own eligibility and availability.