Teens learning about SUDEP

Most teens with epilepsy will live long, healthy and fulfilled lives. However, there are times when persons with epilepsy die without warning, and without apparent cause. This is known as SUDEP (Sudden Unexpected Death in Epilepsy). Although this is a difficult and scary issue to address, understanding this risk, and what you can do to minimize it, are important.

What is SUDEP?

  • SUDEP, or Sudden Unexpected Death in Epilepsy, is a death that occurs in a person with epilepsy that is unexpected, without warning, and unrelated to an accident or other known cause.
  • SUDEP occurs mostly during sleep.
  • The exact cause of SUDEP is unknown. It is likely that a seizure precedes many cases of SUDEP. It is thought that the seizure in some way suppresses the brain’s drive on breathing and heart rate, leading to death.

How Common is SUDEP? 

  • Overall, SUDEP occurs in approximately one out of every 1000 persons with epilepsy per year. However the risk is substantially higher in those with poor seizure control, particularly if frequent generalized convulsive seizures are present, and substantially lower in persons who have well-controlled seizures.  
  • In teens with uncomplicated epilepsy (no underlying brain abnormality on MRI, normal intellect and normal neurological examination), the overall risk of SUDEP is approximately 1 per 10,000 per year, similar to the rate of death due to motor vehicle or other accidents. 
  • Conversely, in persons with uncontrolled convulsive seizures occurring more often than monthly, the risk can be as high as 1 in 400 per year. 

What Can I Do To Minimize My Risk of SUDEP? 

  • Take your medications as prescribed. Use a reminder on your smart phone if needed. 
  • Never change medications without discussing the change with your doctor.  
  • If your seizures persist despite taking your medications as prescribed, talk to your doctor to see if you may be a candidate for other types of treatment, including surgery, neuromodulation or dietary therapy. If your seizures have not come under control despite trials of two or more antiseizure medications, talk to your doctor about referral to an Epilepsy Center
  • Know your triggers for seizures (sleep deprivation, alcohol and recreational drug use) and avoid these. 
  • Follow regularly with your doctor. 

What Can I Do To Minimize Risk of Injury Due To A Seizure? 

  • Take appropriate precautions around water – persons with epilepsy have a significantly higher risk of drowning than those without seizures. Take showers rather than baths, and ensure you are well-supervised when swimming or around open water. 
  • Modify your environment to reduce the risk of injury
  • Educate your roommate and friends on first aid during a seizure.

Where Can I Get More Information? 

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Authored By: 
Elaine Wirrell MD
Authored Date: 
10/2020