Patients with epilepsy may sometimes die during or after a seizure for no apparent reason. This phenomenon is known as sudden unexpected death in epilepsy (SUDEP). The U.S. Centers for Disease Control and Prevention estimates that SUDEP occurs in roughly 1 in every 1,000 people with epilepsy each year.

Dravet syndrome, also known as severe myoclonic epilepsy of infants, causes multiple episodes of severe and often treatment-resistant seizures in patients, beginning in infancy. The risk of SUDEP in Dravet syndrome patients is 15 times higher than those with other types of childhood-onset epilepsy. SUDEP is estimated to cause at least half of all deaths in Dravet syndrome. Still, SUDEP is rare and may be preventable.

Causes of SUDEP

The exact cause of SUDEP remains unclear. It is thought that changes in breathing, heart rhythms, or a combination of both may contribute to SUDEP. Seizures may cause an abnormal obstruction of the airways or induce brief pauses in breathing, known as apnea. Seizures may also trigger abnormal heart rhythms that result in death.

Risk factors of SUDEP

Patients who have uncontrolled or frequent seizures or have generalized tonic-clonic seizures, also known as grand mal seizures, are especially prone to SUDEP.

Other risk factors include longer duration of epilepsy, development of seizures at a young age, missed doses of seizure medication, and drinking alcohol.

Some studies have suggested that certain gene mutations may also be associated with a higher risk of SUDEP.

Preventing SUDEP

Good seizure control is imperative to lowering the risk of SUDEP. Examples of ensuring good seizure control are taking anti-epileptic medication regularly at the same time every day and avoiding triggers known to cause seizures. Regular visits and active participation in doctor appointments may also contribute to better seizure control for patients.

SUDEP usually happens when a person is asleep. It may, therefore, be a good idea for patients to have a seizure alarm that alerts a caregiver when a seizure is occurring at night.

Another measure to prevent inadvertent suffocation is the use of anti-suffocation pillows, which have holes in them that can help ensure that patients who are lying face down are still able to breathe.

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Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.