SUDEP
SUDEP is what took Cameron from us. It's why this foundation exists.
Understanding Sudden Unexpected Death in Epilepsy, known as SUDEP, and knowing how to reduce the risk can help protect the people you love. On this page, you’ll find what SUDEP is, questions to ask your doctor, and steps you can take to lower your risk.
Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP
SUDEP refers to deaths in people with epilepsy that aren’t caused by injury, drowning, or other known causes. Most cases happen during or right after a seizure. Researchers don’t fully understand why SUDEP happens, but it may involve breathing changes during a seizure, dangerous heart rhythm changes, or a combination of both.
People with epilepsy face a higher risk of SUDEP if they have frequent or uncontrolled seizures, generalized convulsive seizures, or seizures at night. Starting seizures at a young age, living with epilepsy for many years, missing medication doses, and drinking alcohol can also raise the risk.
Reduce your risk of SUDEP!
Small changes can make a big difference. Here’s where to start.
1
See a specialist
Work with an epileptologist at a level 4 center who knows the latest treatment options and can help you find the right one.
2
Keep a Seizure Diary
Tracking your seizures helps identify triggers and changes, and gives your doctor useful information.
3
Explore Treatment Options
Talk to a trusted doctor about rescue medications, surgery, neurostimulation devices, or dietary therapy.
4
Consistent Medication
Pill boxes, alarms, and reminders can help you stay consistent, since missed doses are a common seizure trigger.
5
Seizure Action Plan.
Share it with family, friends, teachers, school staff, and coworkers so they know how to help during a seizure.
6
Stay Safe, Stay Supervised
Arrange to have someone with you during activities where a seizure could lead to injury, and consider a seizure detection device when supervision isn’t possible, especially overnight when SUDEP risk is higher.
Frequently asked questions
What causes SUDEP?
Researchers don’t know the exact cause, but it may involve breathing pauses during a seizure that lower oxygen levels, airway blockage, or dangerous changes in heart rhythm.
Who is most at risk?
People with frequent or uncontrolled seizures, generalized convulsive seizures, or nighttime seizures face a higher risk. Risk also increases with early seizure onset, years living with epilepsy, missed medication doses, and alcohol use.
Can SUDEP be prevented?
There’s no guaranteed way to prevent SUDEP, but controlling seizures through consistent medication, working with a specialist, and taking precautions like seizure alert monitors can help lower the risk.
What age group is most affected?
SUDEP occurs more often in people between ages 21 and 40 compared to other age groups.