The Family Resource Network Epilepsy Foundation of New Jersey

SUDEP

SUDEP stands for Sudden Unexpected Death in Epilepsy

May be the cause of death when:

  • A healthy person with epilepsy dies suddenly without drowning or trauma
  • The person may or may not have had a seizure before death
  • No other reason for death is found upon exam after death
    • Person was not using illegal drugs (example: cocaine)
    • Person did not have a heart attack

The exact cause is not yet known. Some common theories causing SUDEP include:

  • Heart arrythmias (abnormal heart rhythms)
  • Breathing trouble
  • Brain shutdown

Statistics

  • 1 out of 1,000 patients with epilepsy die unexpectedly each year
  • In those with uncontrolled epilepsy, risk increases to 1 out of every 150 people
  • Risk of SUDEP increases when:
    • Seizures are not well controlled (treatment resistant epilepsy)*
      • Treatment resistant epilepsy = failure of 2 rounds of appropriate and tolerated seizure medication
      • Treatment resistant epilepsy is common in patients with autism
    • A patient suffers from generalized tonic-clonic seizures
    • Seizures happen at night when the person is sleeping

Bereavement Resources

If you have lost a loved one from SUDEP and are looking for more information for support groups in your area, call the Epilepsy Foundation of New Jersey at 800.336.5843.

If you are from another state and would like to find the closest Epilepsy Foundation to you, please visit: www.epilepsyfoundation.org. The main Foundation site will let you find the closest Foundation to your home by entering your zip code.

Oftentimes local hospital systems offer face-to-face bereavement groups for families that have lost a loved one. While these groups may not be SUDEP specific, people do find it helpful to speak with others going through a similar loss.

Other bereavement groups may be offered through local organizations, like community religious centers as well. Should you find that you need to speak to a healthcare professional in private, please do not hesitate to call your physician to obtain the name of someone local that you can speak with.

The following websites listed have a lot of good information about SUDEP. Should you want to learn more about SUDEP, please feel free to visit the sites listed below for more information. These sites, especially the Epilepsy Foundation’s and sudepaware.com are constantly being updated as research becomes more current.

Here are a list of websites with more information on SUDEP:

To view a recording of the October 4th SUDEP Webinar presented by Evan Fertig, M.D. please click here.