Sudden Unexpected Death In Epilepsy (SUDEP)

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What is SUDEP?

SUDEP, or Sudden Unexpected Death In Epilepsy refers to when an otherwise healthy person with epilepsy dies, and there is no connection to any other cause of death, such as an accident, illness, injury, or drowning.

SUDEP mostly occurs at night when people are sleeping, so there are few descriptions of what happened leading up to the person’s death. The person is often found lying face down in their bed, and the cause of death cannot be determined when an autopsy is performed. Often coroners list the cause of death as unknown, or a possible heart condition.

According to the Epilepsy Foundation’s Website, more than 1 out of 1,000 people die each year from SUDEP. That’s too many. Learning more about SUDEP and strategies you can take to help prevent it is the best way to prevent SUDEP from taking place. Proactivity is key.

If you or someone you know experiences epilepsy, you need to be proactively focused on ways to prevent seizures. The fewer seizures you have, the lower the risk of SUDEP.

Partners Against Mortality in Epilepsy provides a Frequently Asked Question Page here where you can learn more about it.

DannyDid.org provides an Epilepsy and SUDEP Page here

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What are the risk factors for Sudden Unexpected Death in Epilepsy?

SUDEP is now the leading cause of death in epilepsy.

The risk factors for SUDEP include:

  • Active generalized tonic-clonic seizures (GTCS) whose seizures are not controlled by medication.

  • Nocturnal seizures

  • Dravet’s Syndrome – this is the leading cause of death for those diagnosed with Dravet’s.

  • Early onset epilepsy – those whose seizures began at an early age.

  • Missing medication doses or choosing to stop taking medications when seizures are still uncontrolled.

  • Drinking Alcohol

SUDEP is the leading cause of death in young adults with uncontrolled seizures. 

SUDEP is the 2nd highest neurological cause of death after stroke.

Did You Know?

At least 3,000 people per year die from SUDEP in the US and Canada

Providing SUDEP Education helps people find ways to take their medication on time and as prescribed, and encourages them to avoid things and places that may trigger their seizures.

Did You Know?

100% of patients believe they should be informed about SUDEP.

What steps can I take to reduce the risk of SUDEP?

Seizure Freedom Can Reduce the Risk of SUDEP

  • Make sure you take your prescribed medications regularly. Don’t skip doses — if you accidentally miss a dose, take it as soon as you realize you have missed it.

  • If your medication is causing side effects, discuss those side effects with your doctor, and explore whether there are alternatives to the medication(s) causing you side effects.

  • Drink alcohol only in modest amounts; it’s safest not to drink any at all.

  • Exercise regularly – a simple 30 minute walk improves your mood and allows you to sleep better. It may also help lessen your seizures.

  • Make sure you get a good night’s sleep. Sleep is essential to helping stop seizures. Many seizures happen when you are very tired.

Knowing more about SUDEP will allow all of us to become proactive in preventing it.

  • Your life is important to us. Follow your Dr.’s advice on medication, sleep and more.

  • If you haven’t already talked to your neurologist/epileptologist about SUDEP, make sure to ask.

  • Being aware of SUDEP is the first step to taking good care of your life with epilepsy.

Check out Epilepsy Foundation’s website about SUDEP and the North American SUDEP Registry.

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