Epilepsy is a condition that affects the brain and causes people to have seizures. Seizures can look different for everyone, but they often involve unusual movements, confusion, or a loss of awareness.

While many people with epilepsy live normal lives with the help of medication and treatment, there is a rare but serious risk called “SUDEP,” which stands for Sudden Unexplained Death in Epilepsy. In this blog post, we will explore what SUDEP is, why it happens, who is most at risk, and how people with epilepsy can reduce their chances of it occurring.

What is SUDEP?

SUDEP happens when a person with epilepsy dies unexpectedly, and there is no clear reason for their death. In other words, doctors cannot find any other cause, like a heart attack or an accident, that explains the person’s passing. Although the exact cause of SUDEP is not fully understood, it is thought to be related to seizures.

Doctors believe that SUDEP happens most often when a person has a seizure during sleep, but it can happen after any type of seizure. The cause may be linked to changes in the brain or heart during or after a seizure. While SUDEP is very rare, it is still an important issue for those with epilepsy and their families to be aware of.

Why does SUDEP happen?

The exact reasons why SUDEP occurs are not completely known, but scientists have some ideas about how it might happen. Here are some theories about the causes:

• Seizures affecting the heart: Some seizures can interfere with the electrical signals in the brain that control the heart. This can lead to an abnormal heart rhythm, called arrhythmia, which can stop the heart from beating properly, potentially causing death.
• Breathing problems during seizures: Some people stop breathing or breathe very irregularly during a seizure. If breathing stops for too long, it can lead to a lack of oxygen in the body, which can be dangerous.
• Brain activity changes: Seizures can cause sudden changes in the brain, including the areas that control things like breathing and heart function. In rare cases, these changes might lead to death.
• Sleep-related seizures: Many people who experience SUDEP have their fatal seizures during sleep. This can make it harder for others to notice that a seizure is happening or to help before it becomes dangerous.

Scientists are still studying these causes and trying to find out more about why SUDEP occurs and how it can be prevented.

Who is at risk for SUDEP?

SUDEP is the single largest cause of direct epilepsy-related deaths accounting for almost half. It is more likely to happen to some people with epilepsy than others. Some of the risk factors that might increase the chances of SUDEP include:

• Having frequent seizures: People who have more frequent or severe seizures are at higher risk for SUDEP. This is especially true if the seizures are not well-controlled with medication or other treatments.Uncontrolled seizures during sleep: Seizures that happen at night or while a person is asleep may be more dangerous because they can go unnoticed, making it harder to get help in time.
• Young adults: SUDEP is more common in young adults, especially those between the ages of 20 and 40, although it can happen at any age.
• Long-term epilepsy: People who have had epilepsy for many years and have had trouble controlling their seizures may be more likely to experience SUDEP.
• Not taking medications as prescribed: If someone with epilepsy doesn’t take their medication as directed by their doctor, it can increase the risk of seizures, which in turn may increase the risk of SUDEP.

It’s important to remember that most people with epilepsy do not experience SUDEP. But knowing the risk factors can help doctors and families make choices that can reduce the likelihood of it happening.

How can SUDEP be prevented?

There is no way to completely eliminate the risk of SUDEP, but there are steps that people with epilepsy can take to lower their chances. The goal is to control seizures as much as possible and create a safe environment to reduce the risk of harm. Here are some tips that might help:

• Take medications as prescribed: One of the most important ways to reduce the risk of SUDEP is to take epilepsy medications exactly as prescribed by a doctor. Skipping doses or stopping medication can increase the chance of seizures, which can make SUDEP more likely.
• Talk to your doctor about seizure control: If seizures are not well-controlled, it is important to talk to a doctor. There may be other treatments or medication adjustments that can help reduce the number of seizures.
• Consider a seizure action plan: People with epilepsy should have a plan in place for what to do during a seizure. This plan may include things like making the area around the person safe, keeping track of how long the seizure lasts, and knowing when to call for emergency help.
• Use monitoring devices: Some people with epilepsy use special devices that monitor for seizures during sleep. These devices can alert a caregiver or family member if a seizure is happening, so they can step in and help. There are also wearable devices that can detect seizures and alert others; however, home seizure detection devices, while effective at picking up convulsive seizures, have not led to reducing SUDEP outside of the hospital setting due to the need for resuscitation by specialized intensivists.
• Make the sleeping environment safe: Since seizures during sleep are a risk factor for SUDEP, it is important to create a safe sleeping environment. For example, sleeping on a firm mattress and avoiding pillows or soft bedding that could cause suffocation during a seizure might be helpful.
• Avoid triggers: Certain things can trigger seizures in some people. Common triggers include lack of sleep, stress, flashing lights, or missing doses of medication. Identifying and avoiding these triggers can help reduce the risk of having a seizure.
• Support from family and friends: It’s important for people with epilepsy to have a strong support system. Family members, friends, and caregivers should be informed about the person’s condition and how they can help in case of a seizure. Knowing when to seek medical help or call 911 is essential.

What should families know?

The possibility of SUDEP can be scary for families and friends of people with epilepsy. It’s important to remember that although SUDEP is a rare event, it is a real concern for some people with epilepsy. Here are a few things families should know:

• Open communication: Families should talk openly with doctors about SUDEP and what steps they can take to reduce risk. It’s okay to ask questions and share concerns.
• Understand the risks: While SUDEP can feel frightening, most people with epilepsy do not experience it. Understanding the risk factors can help families take proactive steps.
• Encourage safety: Families can help by making the home a safe environment and encouraging the person with epilepsy to follow their treatment plan carefully.
• Emotional support: Epilepsy and the risk of SUDEP can be emotionally challenging. It’s important for people with epilepsy and their families to have emotional support from friends, counselors, or support groups.

SUDEP is a rare but serious risk for people with epilepsy. Although scientists are still working to understand exactly why it happens, there are steps that can be taken to reduce the risk of SUDEP. Taking medications as prescribed, getting good seizure control, using safety devices, and having a support system are all ways to lower the chances of SUDEP.

If you or someone you know has epilepsy, it’s important to talk to a doctor about ways to reduce the risk of seizures and stay safe. With the right care and attention, most people with epilepsy can live healthy and fulfilling lives, and they can minimize the chances of something as tragic as SUDEP occurring.

If you have questions or concerns about epilepsy or SUDEP, contact the Epilepsy Program at the WVU Medicine Children’s Neuroscience Center or the Epilepsy Center at the WVU Rockefeller Neuroscience Institute. You’ve come to the right place.