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Advancing Awareness of Epilepsy & Sudden Unexpected Death in Epilepsy (SUDEP)


Epilepsy & SUDEP FAQs

Danny Did FAQs Questions

Questions & Answers

Can people die from epilepsy?

Yes. Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death:

  • Accidents such as drowning, burning, choking, or falling can occur during a seizure, and may result in injuries that are serious or life threatening.
  • Very long seizures, or seizures that happen quickly and one after another (called status epilepticus), can be life-threatening. Ask your doctor about the scenarios under which status epilepticus could occur.
  • People with epilepsy are more prone to experience depression and anxiety. In extreme cases, this can increase the risk for suicide.
  • Some people with epilepsy may die suddenly and without explanation. This is SUDEP.

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What is SUDEP?

A death is referred to as SUDEP when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In most cases, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:

  • The person has epilepsy, which is defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly and during normal activity (often during sleep).
  • An obvious medical cause of death could not be determined at autopsy.
  • The death was not the direct result of status epilepticus.

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How often does SUDEP occur?

The incidence of SUDEP differs greatly depending upon the population studied. One challenge in pinpointing the numbers behind SUDEP is that information from county and state mortality registries is sometimes incomplete. Some coroners, medical examiners and other physicians are unfamiliar with SUDEP, and so would not list SUDEP on a death certificate. Persons with absence or myoclonic seizures are not known to have increased risk for SUDEP, whereas the risk of sudden death increases among people with convulsive seizures. Talk with your doctor, neurologist or epileptologist to access the risks factors of SUDEP as they relate to you or your loved one (see risk factors list to the right).

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What causes SUDEP?

At this time, the precise cause or causes behind SUDEP are not known, although research is underway that attempts to define or better understand them. Most theories about SUDEP focus on breathing (respiration), heart rhythms and brain function, or some combination of those three factors. What role seizures play in SUDEP is currently being studied. The majority of SUDEPs follow tonic-clonic (grand mal) seizures.

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What are the risk factors for SUDEP?

SUDEP can happen to anyone with epilepsy. Some people are at higher risk than others, and you should discuss your individual risks with your doctor. Risk factors that are most consistently associated with SUDEP are:

  • Seizures that can’t be controlled
  • Not taking anticonvulsant medicine as prescribed.
  • A higher number of anticonvulsant medications, at high doses
  • Long-standing chronic epilepsy
  • Generalized tonic-clonic seizures
  • Seizures that happen during sleep
  • Stopping the use of anticonvulsant medicine abruptly
  • Developmental delays
  • Onset of epilepsy at a young age

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What can I do to reduce the risk of SUDEP?

  • The full understanding of SUDEP is still unfolding, but there are measures that people with epilepsy and their families can take in an effort to minimize their risk:
  • People with epilepsy should make sure to take the medications prescribed for them to maximize seizure control.
  • If medicines are not effective, consider other therapies such as surgical options, dietary options, research drug trials, or or devices/technologies that may help to enable early intervention when seizure activity occurs.
  • Consider supervision or monitoring during sleep hours to identify seizure activity.
  • Lead a healthy lifestyle and keep stress to a minimum whenever possible. Patients should regularly visit with their doctor, especially if convulsive seizures are not completely controlled.
  • Ensure that family members and caregivers have knowledge of seizure first aid and of emergency resuscitation measures including CPR and defibrillator use.

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What should I know about seizure detection devices and resources?

A variety of options exist, from sleep monitors to seizure dogs to wristwatches, that can be helpful in alerting to certain types of seizures and enabling early intervention. Some undergo clinical trials to provide data on their ability to detect certain seizure types. Some of these devices are listed here on our website. Danny Did does not recommend any one device, but simply that you investigate your options and see which one could be a fit for you and your loved one. Please note that to date, no commercially available seizure detection/monitoring devices have been proven to predict or prevent SUDEP. That remains unknown. If you find a device that seems like a fit for your needs, ask the manufacturer if they can provide data that supports its usefulness, and consult your doctor for their feedback.

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How do I talk with my doctor about SUDEP?

If your doctor has not spoken with you about the health risks associated with epilepsy, including SUDEP, schedule an appointment to meet with them. We suggest some questions to ask here, designed with the goal to enhance communication and empowerment and to minimize the epilepsy-related risks for your loved one. Remember, no one can or will advocate for your loved one better than you.

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