Knowledge Is EmPOWERing

What You Need to Know About Sudden Unexpected Death in Epilepsy (SUDEP)

At EPI, we believe that knowledge is empowering – and we strive to advance public awareness and understanding of SUDEP through education. In addition to explaining what SUDEP is, the various sections in this web site provide helpful “Frequently Asked Questions” to foster proactive communication between healthcare providers and families affected by seizures, as well as valuable first aid tips and information about seizure detection devices. The goal is to elevate awareness of, and access to, technologies that enable early intervention and added safety when a seizure occurs.

EPI strongly recommends that everyone with epilepsy talk to their neurologist about SUDEP. The information presented here is general SUDEP information.

When you or someone you love is living with seizures, it’s only natural to have concerns about safety and staying well. The risk of SUDEP are small, per the CDC, typically 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from Sudden Unexpected Death in Epilepsy (SUDEP) each year. This occurs when a person with epilepsy dies unexpectedly and was previously in his or her usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other cause of death can be found.

No one knows what causes SUDEP, yet it happens most often at night or during sleep when the death is not witnessed, leaving many unanswered questions. There may be evidence that a person had a seizure before dying, but this isn’t always the case. Current research is focused on problems with breathing, heart rhythm and brain function that occur with a seizure.

All people with epilepsy are at risk for SUDEP. However, higher risk is associated with being 20 to 40 years of age, as well as having epilepsy as a youth. The main risks for SUDEP are: 

  • Missed doses of medicine or abruptly stopping use of medications
  • Uncontrolled or frequent seizures
  • Generalized convulsive (also called tonic-clonic or grand mal) seizures
  • Seizures that occur during sleep
  • Seizures that begin at a young age
  • Many years of living with epilepsy

It is not known yet how to prevent SUDEP, but the best way to reduce its risk is to have as few seizures as possible. It’s important to:

  • Take medications regularly and as prescribed
  • Learn how to better control seizures with epilepsy self-management programs
  • Have a seizure action plan in place at home, school and/or work.
  • Avoid seizure triggers if these are known
  • Keep a record of your seizures
  • Get enough sleep, eat a healthy diet, exercise regularly and minimize stress when possible
  • Do not drink too much alcohol or use recreational drugs
  • Train adults and/or caretakers in the house in seizure first aid
  • See your epilepsy physician and other healthcare providers regularly
  • Consider the use of a seizure monitor or device to enable intervention after a seizure

Frequently Asked Questions about SUDEP

If you’re the parent of or caregiver for a person with epilepsy, you are often faced with many decisions to make – and finding ways to help your loved one live the fullest life possible can be overwhelming. When meeting with your doctor, be sure to ask him or her to discuss the risk of SUDEP with you. It may also be helpful to have someone accompany you to your appointment – and be sure to take notes.

Following are some “Frequently Asked Questions and Answers” to help start the conversation with your healthcare provider:

SUDEP happens without warning, when no cause of death is found. It is the leading cause of death for young adults with uncontrolled seizures. The risk of dying from SUDEP each year is about 1 out of 1,000 people with epilepsy.

The diagnosis of SUDEP is based mainly upon history and postmortem examination findings, such as the patient being found in a prone position.

Evidence suggests that SUDEP occurs due to seizure-induced disruption of respiratory, cardiac and electrocerebral function, as well as potential predisposing factors. It has been consistently observed that SUDEP happens more during the night and the early hours of the morning.

The answer depends on how severe the epilepsy is and the type of seizures he or she is having. While some studies show that rates of SUDEP are lower in children, others find rates similar to those seen in adults.

Often there are signs that a person had a seizure before dying, but this isn’t always true. While a seizure is not a requirement for SUDEP to be diagnosed, recent studies suggest most SUDEP cases are likely seizure-related.

There are some studies that suggest genetic factors may play a role, but no definite information is available at this time. Several research efforts are looking into genetics and SUDEP.

There is no data to support the use of these pillows to prevent SUDEP. They are made to help people who are at risk for suffocation. Talk to your healthcare provider about any possible benefits of these pillows for you or your loved one.

Having someone available at night who is able to provide help during and after a seizure may be one way to limit SUDEP. For example, a person could help provide first aid, keep the person on his or her side when having a seizure and reposition the individual after the seizure so breathing isn’t blocked. However, this is often not practical or desired and more scientific evidence is needed to prove that it is effective in helping to prevent SUDEP.

Several devices are available to detect seizures and alert caregivers when a seizure occurs, although the devices may not alert you that your loved one has stopped breathing. Whether these devices can prevent SUDEP remains unknown.

Be Seizure Safe

Seizures, treatments and other health problems carry risks for many people with epilepsy. Learning to lessen these risks is a critical part of living safely with seizures. Always be sure that family members, caretakers and co-workers follow basic first aid tips for helping someone who is having a seizure, such as:

  • Ease the person to the floor
  • Turn the individual gently onto one side to help him or her breathe easier
  • Clear the area around the person of anything hard or sharp to minimize injury
  • Put something soft and flat, like a folded jacket, under his or her head
  • Remove any eyeglasses and loosen ties or anything around the neck that may restrict breathing
  • Call 911 if the seizure lasts longer than 5 minutes

Arrange your home, and if possible, work or study space, to be safe should you or your loved one have a seizure. For example, pad sharp corners, use non-slip carpet, avoid scatter rugs and put barriers in front of fireplaces or hot stoves.

If you or your child wanders or are confused during or after a seizure:

  • Pay special attention to heights, railings and nearby pools or bodies of water
  • Shut doors when you are home alone to help eliminate the chance of wandering outside or into dangerous areas
  • Make sure someone else (neighbor, friend) has a key to get in and check on you

If you or the individual you care for falls during seizures, “fall-proof” your home and other areas. Put in carpets and avoid furnishings such as glass tables. Also consider wearing a protective helmet.

Seizure monitors can help notify others when a seizure happens. An alarm is then triggered so that assistance can be provided. These monitors, which are sometimes called alarms, can be helpful especially for children who have seizures during the night. While a monitor cannot guarantee safety or be accurate in detecting all seizures, they can provide a level of peace of mind for some people.

Some types of monitors or alert devices involve “wearable technology” – smart electronic devices that an individual wears as an accessory (like a watch). Some watch-based seizure alert devices respond to repeated shaking movements, which may indicate the person is having a seizure. This can be useful for detecting tonic-clonic seizures, as well as focal motor seizures if there is enough movement involved.

However, to date there has been no proven evidence to indicate that using a monitor or alert device can guarantee the safety of a person experiencing seizures – plus, no technology has been designed to prevent seizures or their possible impacts. Ongoing research is being conducted to determine the benefits of these devices. So be sure to learn as much as you can about seizure monitors and alert devices – and speak to your doctor before making a purchase or using one. This will help you to decide whether a particular device is suitable for your situation and needs.

Please note that EPI does not warrant or endorse any seizure monitor or alert device products. We recommend that you consult with your healthcare provider prior to using them.

More Information

NYS recently passed a law that requires information be provided to patients & health care practitioners about SUDEP. Read the Natasha Gembka SUDEP Awareness Act here:

NYS SUDEP Legislation

Talk to your or your child’s doctor, then download these handouts from the Child Neurology Foundation for next steps.

An additional resource from CNF is a newly released Preventing Epilepsy Deaths Toolkit that provides information for both clinicians and families.

For more information or if you have any questions, please contact:

Michael Radell

Education Coordinator/Camp Director
Phone: (585) 442-4430 ext. 2741