What is Sudden Unexplained Death in Epilepsy?
A neurologist goes into detail about SUDEP
It may be the scariest condition you’ve never heard of: Sudden Unexplained Death in Epilepsy (SUDEP)
The Epilepsy Foundation describes SUDEP as “the sudden unexpected death of someone with epilepsy, who was otherwise healthy.” No other cause of death is found when an autopsy is performed following SUDEP.
Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. While those numbers show how rare SUDEP occurs, the Epilepsy Foundation calls SUDEP the leading cause of death in people with uncontrolled seizures.
Currently physicians don’t have a way to predict or prevent SUDEP. The criteria to classify a death from SUDEP include:
- Patient suffers from epilepsy
- Death occurs suddenly
- Death is unexpected, while the patient is in reasonably good state of health
- Death occurs during normal activities
- No cause of death determined by autopsy
- Death is not a direct result of a known seizure or status epilepticus (but may occur following a seizure)
Some in the medical community fear that discussing SUDEP will raise anxiety in patients and families without reason, said Cynthia Keator, M.D., medical director of the Epilepsy Monitoring Unit at Cook Children’s.
“But I think it’s our responsibility as physicians within the medical community to make people aware of this rare condition,” Dr. Keator said. “We have seen studies that show patients and families want to know the risks they face.”
While the causes of SUDEP aren’t known for sure, SUDEP happens most often at night. Experts believe it may happen when there are problems with breathing, heartbeat and brain function after a seizure.
“Right now, most experts believe the best way to prevent SUDEP is through good seizure-management control. For people with poorly controlled seizures, the risk of SUDEP is much higher. It’s 1out of 150 each year,” Dr. Keator said.
Seizure management control means:
- Taking medication on time, every day – exactly as prescribed.
- Keeping a healthy diary of seizures, test results and asking questions of your doctor.
- Knowing your seizure triggers such as not getting enough sleep or feeling stressed.
- Creating and sharing your seizure response plan with others.
“It’s important for family, friends and caregivers to be informed of what to do during and following a seizure,” Dr. Keator said. “This includes knowledge of the recovery position and cardiopulmonary resuscitation techniques. Also, people need to know they should call an ambulance if the seizure lasts for more than 5 minutes or repeats without full recovery. It’s also important that people do not leave someone who has had a seizure for at least 15 to 20 minutes after the seizure to ensure that recovery continues.”
Get to know Cynthia Guadalupe Keator, M.D.
Dr. Keator is the medical director of the Epilepsy Monitoring Unit at the Jane and John Justin Neurosciences Center. Dr. Keator has dedicated her career to the field of pediatric epilepsy, in part because there is always something new to learn, and especially because great strides are constantly being made in the medical treatments available to kids who are diagnosed with this condition. These advances make profound differences in the lives of children and their families. On a daily basis Dr. Keator witnesses children outgrow the condition, go into remission or find effective treatment. Click to learn more about her.