Preventing Epilepsy Deaths: Clinician Toolkit

Epilepsy Can Be Life-Threatening: Steps to Decrease Your Risk

People with epilepsy are at significantly higher risk of death, but the good news is that there are steps that can lower the risk. Seizures can increase the chance of fatal accidents. Other life-threatening complications can include status epilepticus (seizures longer than 5 minutes or multiple seizures within a single 5-minute period), sudden unexpected death in epilepsy (SUDEP), and other health conditions that do not appear directly related to epilepsy.
Things that increase risk of death:

Having more than one convulsive seizure in a year

Accidents related to seizures

Unsupervised seizures

Having additional chronic health conditions

Frequent visits to the emergency room

Mental health challenges, such as depression or substance dependence

How to decrease risk of death:
  • Reduce the number of seizures
    • Take medications on time every day, exactly as prescribed. Use pill boxes, alarms, or other reminders to help.
    • Discuss different treatment options with a trusted doctor. These may include rescue medications, surgery including neurostimulation devices, or dietary therapy.
    • Get a referral to see an epilepsy specialist who will be familiar with the latest treatment options.
    • Keep a seizure diary, which can help identify seizure triggers or changes.
  • Create a seizure action plan. Share it with family, friends, school staff, and co-workers to teach them how to help during a seizure.
  • Minimize the risk of accidental injury during a seizure, such as drowning or falling, by arranging oversight.
  • Arrange for supervision as appropriate for one’s age and living situation.
  • Consider a seizure detection device when supervision is not available, especially while asleep when SUDEP risk is increased.
  • Notify your doctor of any health or medication changes.