Can getting good care of my epilepsy prevent SUDEP?

Yes it can help! The risk for SUDEP (sudden unexpected death in epilepsy) is higher in people with uncontrolled seizures. Thus, having as few seizures as possible, or ideally zero seizures, is the best way to lessen your risk and prevent SUDEP. Getting the "best care" you can for your seizures will help improve seizure control.

Keep in mind that there’s a lot about SUDEP we don’t understand. People with epilepsy can still die from SUDEP, even with the best care and the best seizure control.

How can I get better control of my seizures?

There are lots of things you can do to get better seizure control. First ask yourself if you’re getting the quality of care that you need

Then look at what steps you can take, such as:

How can I be prepared and stay safe?

  • Make sure family, friends and co-workers know what to do for seizure first aid.
  • Keep your Seizure Response Plan up-to-date and make sure people close to you know where it is and how to use it.
  • Be seizure safe! Take extra precautions around water, including swimming and bathing.
  • Since SUDEP occurs most often during sleep, consider a seizure alert monitor if you have seizures at night.
    • People who have frequent seizures at night may want to share a room so help is available if needed.
    • Talk about how you can still have privacy and make sure that everyone still gets a good nights sleep!
Authored by: Cyndi Wright | Patricia O. Shafer, RN, MN | Joseph I. Sirven, MD on 8/2013
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 3/2014
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The Epilepsy Foundation SUDEP Institute is awarding more than $1 million for a series of at least three prize challenge competitions that work to build awareness for, predict and prevent SUDEP.  Learn more about the challenge series and register for the current challenge.

Spotlight

Jeff Buchhalter, MD, PhD, talks about the ketogenic diet as a treatment for seizures and how its use might reduce the risk for SUDEP.

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