Sudden Unexpected Death in Epilepsy (SUDEP): What We Know

Mohankumar Kurukumbi, MD, is an epileptologist and Medical Director of the Inova Epilepsy Center at Inova Fairfax Hospital in Falls Church, VA.

The recent death of 20-year-old Disney Channel star Cameron Boyce, who died in his sleep apparently of an epilepsy seizure, has renewed focus on a small but ever-present threat to individuals with epilepsy: sudden unexpected death in epilepsy, or SUDEP.

Epilepsy is a neurological condition characterized by electrical surges in the brain that cause seizures. There are many different types of seizures that people with epilepsy can have, and the symptoms are not always the same. Striking about 1 in 1,000 people with epilepsy, SUDEP actually claims more lives annually than sudden infant death syndrome (SIDS) but has received far less attention. Still, the odds of SUDEP are slim and there are identified high-risk groups.

Who’s most at risk of SUDEP? People with epilepsy who:

• Have, on average, more than two or three convulsive or grand mal seizures in a year
• Experience grand mal seizures, which can cause convulsions and loss of consciousness, usually lasting one to three minutes
• Live with well-controlled seizures. They can die from SUDEP even after missing just one dose of their prescribed epilepsy medication(s)
• Are ages 13 to 23 years old, because of non-compliance to meds and denial of epilepsy diagnosis

Those with less-severe forms of epilepsy, whose seizures may cause them to shake or briefly lose awareness of what is around them, face lower odds of SUDEP. But anyone with epilepsy is at risk and needs to take proactive measures to avoid this situation.

How can epilepsy patients and their loved ones protect against SUDEP?

• Never miss a dose of medication. About half of epilepsy patients can effectively control seizures with one medication, while another 10% to 15% require an additional medication or two. Regardless of the number of seizure drugs you are prescribed or how well your seizures are controlled, it is crucial to take medication on time, every time and at the correct dose.
• Use a seizure alert device. Available in a variety of formats — including wearable watches or bracelets – seizure alert devices generate an alarm that alerts family members or friends to a seizure in progress. This can allow them to check on the person with epilepsy, wake them if they are sleeping, make sure they are breathing properly, and potentially avert SUDEP. While teens and young adults — who are at higher risk for SUDEP — may prefer more independence, this monitoring technology can improve their safety.
• Track your seizures. Keep an epilepsy diary that notes when seizures occur, possible triggers and any medication changes. Consider advanced treatment options if seizures are not controlled. Some 65%–70% of the population with epilepsy have seizures that are well-controlled with seizure medications. One-third of the population with epilepsy have seizures that are poorly controlled and need advanced treatment options in Level 4 Epilepsy Centers, like the Inova Epilepsy Center.

What services does Inova have to offer?

Inova’s Comprehensive Epilepsy Program has accreditation from the National Association of Epilepsy Centers (NAEC) as a Level 4 program (indicating the highest level of epilepsy care). The Inova Epilepsy Center team currently sees approximately 2,500 epilepsy patient visits annually, and the epilepsy program continues to expand. The Inova Epilepsy Center offers in-depth evaluation along with a variety of testing, EEG monitoring in epilepsy monitoring unit, and treatment. Cutting-edge therapies such as epilepsy surgery, vagus nerve stimulation (VNS), responsive nerve stimulation (Neuropace) and newer anti-seizure drugs can help to make the difference between controlled and uncontrolled epilepsy — thus lowering the odds of SUDEP.

Unfortunately, epilepsy is not a preventable disease; it kills more people than breast cancer annually. Spreading the awareness of epilepsy, SUDEP is essential for the reduction in morbidity and mortality.

Get Help for Epilepsy
Learn about services and treatments available at the Inova Epilepsy Center. Call 703.845.1500.