SUDEP

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. This is the leading cause of death in people with uncontrolled seizures.

Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP.

According to a 2017 article by Greenlund, in 2014, SUDEP related deaths were more likely to occur in African Americans (1.42 deaths per 100,000) compared to Caucasions (0.86 deaths per 100.000).

What Causes SUDEP?

No one is sure about the cause of death in SUDEP.

SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.

More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

SUDEP Risk Factors

The main risk factors for SUDEP are:

• Uncontrolled or frequent seizures
• Generalized convulsive (also called tonic-clonic or grand mal) seizures

Other possible risk factors may include:

• Seizures that begin at a young age
• Many years of living with epilepsy
• Missed doses of medicine
• Drinking alcohol

Who Has the Highest Chance of SUDEP?

African Americans have higher rates of SUDEP than do Caucasians. Males are also more likely to have SUDEP than females.

Most cases of SUDEP have been observed in patients with epilepsy who are in their third to fifth decade (ie, age 20-40).

There is a higher incidence at the younger end of the age range, with the average age being around 28-35 years.

The incidence of SUDEP in children appears the lowest, at 0-0.2 cases per 1,000.

(Shahin Nouri, 2015)

Can SUDEP Be Prevented?

SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.

The best way to prevent SUDEP is to lower your risk by controlling seizures. This can be done by:

• Taking anti-epileptic drugs (AEDs) consistently (every day) and around the same time or times each day.
  • This is sometimes referred to as ‘being adherent’ to medication.
• Keeping a diary of when your seizures happen. This will help to show if there is a pattern to your seizures and whether any situations trigger your seizures.
  • It might also be useful to see how well the medication is working to control your seizures.

A review of your epilepsy and treatment with a neurologist or epilepsy nurse might be helpful.

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