Living with epilepsy means carrying an extra worry that most people never think about. It’s the fear of a seizure with no warning that leads, in rare cases, to death. Doctors call this sudden unexpected death in epilepsy, or SUDEP for short.

SUDEP is the sudden death of a person with epilepsy that has no other clear cause, and it’s one of the most serious risks tied to seizure disorders.

SUDEP is rare. About 1 in 1,000 adults with epilepsy die from SUDEP each year, and the risk is even lower in children.

🗳️ Have you discussed risk for sudden unexpected death in epilepsy (SUDEP) with your or your child’s neurologist?

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In this article, we’ll cover the known risk factors for SUDEP and the steps you can take to help protect yourself or your child. Improving your knowledge can help you feel more prepared and less afraid.

You’re Not Alone in Worrying About SUDEP

For many people on MyEpilepsyTeam, SUDEP isn’t just a medical term. It’s a source of daily stress. One member wrote, “The stress and anxiety of being at risk of SUDEP affects my mental health and, of course, my sleep patterns.”

“The stress and anxiety of being at risk of SUDEP affects my mental health and, of course, my sleep patterns.”

— A MyEpilepsyTeam member

Another shared a harder truth, saying they were “scared of SUDEP” after losing two close friends to it and that leaning on others who understand helps them get through.

Parents of children with epilepsy carry a similar fear.

One parent member of MyEpilepsyTeam said, “Every day that my daughter wakes up from her sleep is a great day for me! I’m terrified of SUDEP because she’s in the highest risk group.”

You’re not alone if thinking about SUDEP makes you anxious. It may help to know that most people with epilepsy live long, full lives.

Talking with others who share these worries can help, too.

Can SUDEP Be Prevented?

Researchers don’t fully understand the causes of SUDEP. They believe a seizure may sometimes disrupt breathing or heart rhythm in a way the body can’t recover from, but they can’t yet predict exactly when or why it happens.

Not every risk factor for SUDEP can be controlled, which means it can’t always be prevented. Even so, learning what raises the risk and what can help lower it can give you and your family real ways to take action.

Risk Factors for SUDEP

Researchers have identified several factors that raise a person’s risk of SUDEP. Having one or even all of these risk factors doesn’t guarantee that SUDEP will happen.

Still, knowing the risk factors can help you and your neurologist focus on what matters most.

“Every day that my daughter wakes up from her sleep is a great day for me! I’m terrified of SUDEP because she’s in the highest risk group.”

— A MyEpilepsyTeam member

Frequent Tonic-Clonic Seizures

Generalized tonic-clonic seizures, previously called grand mal seizures, cause the whole body to stiffen and jerk. They’re one of several types of seizures, and they’re the single biggest known risk factor for SUDEP.

People who have three or more tonic-clonic seizures in a year face a much higher risk for SUDEP than people whose seizures are well controlled.

Seizures During Sleep

Seizures that happen during sleep raise the risk of SUDEP even further. Most SUDEP deaths happen while the person is sleeping, often when they’re alone and lying in a prone position (face down).

Doctors think this is because a nighttime seizure that causes someone to stop breathing may go unnoticed when no one else is there. If no one is there to help, a seizure that causes breathing problems can turn dangerous fast.

Early-Onset or Long-Term Epilepsy

Epilepsy that starts at a young age or that a person has lived with for many years is linked to a higher SUDEP risk. This doesn’t mean a long history with epilepsy guarantees danger. It’s one factor among several that your care team weighs together, alongside things like seizure type and how well seizures are controlled over time.

Uncontrolled Seizures or Drug-Resistant Epilepsy

Seizures that don’t respond well to seizure medicine, known as drug-resistant epilepsy, raise the risk, too. In this type of epilepsy, seizures continue even after trying two or more anti-seizure medications.

Skipping doses of anti-seizure medication or stopping your medication suddenly can raise the risk further. Your neurologist can explain your specific epilepsy type and available treatment options.

Certain Genetic Syndromes

Some inherited epilepsy syndromes carry a higher SUDEP risk than others. This may be because the same genetic mutation can affect both the brain and the heart, raising the risk of seizures and abnormal heart rhythms at the same time.

This is one reason genetic testing sometimes comes up in conversations about severe childhood epilepsy. If your child has one of these syndromes, their neurologist may recommend a referral to a genetic counselor if you haven’t talked to one yet.

Living or Sleeping Alone

People with epilepsy who live alone face a higher risk of SUDEP. One recent study found that living alone raised SUDEP risk more than sevenfold.

Sharing a bedroom or having someone nearby who knows seizure first aid and can check on you can make a real difference.

Talking to Your (or Your Child’s) Neurologist

It’s normal to feel nervous bringing up SUDEP with a doctor. But talking about it openly can help you consider precautions together, rather than carrying that worry alone.

“SUDEP scares me, but always being negative can affect your health and the way you live. I try to always be positive in any situation.”

— A MyEpilepsyTeam member

Ask your neurologist about your own risk factors, based on things like your seizure types and how often they happen. If your child has epilepsy, ask whether genetics could be playing a role, since some inherited conditions carry a higher SUDEP risk than others.

If seizures haven’t been well controlled for a while, ask whether it’s time to explore other treatment options. A treatment plan that isn’t working as well as it should is one of the more changeable pieces of the SUDEP puzzle. You can also seek a second opinion with an epilepsy specialist, who may offer a fresh perspective.

Bring your questions to every appointment, and don’t be afraid to push for a plan that keeps seizures under better control. Writing your questions down ahead of time can help ensure nothing gets lost in a short visit.

Staying informed and staying in close contact with your care team are two of the most powerful tools you have. A good neurologist can help turn a source of fear into something you feel equipped to manage.