SUDEP Guideline: What does this mean for me?

The recently released American Academy of Neurology (AAN) and American Epilepsy Society (AES) professional guideline about sudden unexpected death in epilepsy (SUDEP) offers new data about risks of SUDEP and how often it may occur. Now it’s time to think about how people living with epilepsy and their caregivers can use this information. 

Why do we need recommendations about SUDEP?

While death in epilepsy is not common, it can and does happen. It’s frightening to hear of it, yet most people feel worse if a tragedy happens to a loved one and they were never warned that it was possible. 

These guidelines encourage people to take a proactive role – talk to your health care providers and know your risks. These guidelines are especially helpful if there are things a person might be able to do to lessen their risk. Knowing what they can do is the key to reducing one’s risk for SUDEP. 

Keep in mind that taking steps to lessen your risk doesn’t mean it won’t happen. SUDEP, like epilepsy, is unpredictable. Yet taking action allows you to do what’s under your control (at least in part). Here are just a few things people can do.

Know the facts. Talk about your risks for SUDEP with your health care providers. 

This is something that everyone should do.

• In general, a child’s risk of SUDEP is rare. Yet children with some rare epilepsy syndromes can have many types of seizures that happen a lot. The risk of SUDEP in some of these syndromes can be higher. 
• While the risk of SUDEP in adults with epilepsy is not common, it can happen in 1 out of 1000 adults with epilepsy.

Understand the risk of having generalized tonic-clonic seizures.

So far, people with generalized tonic-clonic seizures seem to have a greater risk of SUDEP than people with other seizure types. Frequent tonic-clonic seizures (defined as 3 or more in a year) heighten a person’s risk significantly.  

• When you have a seizure, ask people what happened during it if you don’t know. 
• Track your seizures: Use an online diary or write it down. Just find a way to take accurate information to your epilepsy visits so your providers know what kind of seizures you have and how often. Keep in mind that many of us may have memory problems and may forget vital details if they are not written down.
• Find patterns: Are there any triggers or things that make you more likely to have a seizure? Do they happen at night or during the day? This information can lead to steps you can take to lessen triggers.  
• Seizures at night may raise your risk for SUDEP. Sometimes people are less concerned about nighttime seizures as they don’t interfere with activity during the day. Yet this report suggests that people should pay close attention to seizures at night. Take them seriously and see what can be done to get better seizure control and help you stay safe. 

Pay attention to other seizure types. 

SUDEP can happen with other seizure types too, so don’t ignore them. 

• Keep track of all seizures in your diary.  
• A person who has other seizure types that are not controlled could be at risk for breakthrough tonic-clonic seizures.
• Frequent seizures of any type means you should talk to your health care team about what else can be done. Don’t settle for any seizures without exploring options. 
• Learn steps you can take to get better seizure control. This could be changes in medicine or seeing if surgery, diet therapy, or a device would help. And look at lifestyle changes – your health and wellness habits can affect your seizure control, and changing these can make a difference. 

Use of seizure recording or alerting devices.

The guideline suggests if a caregiver shares a bedroom with a person who has seizures at night or if a seizure detection system is used, then these actions could help lessen the risk of SUDEP. There are a few things to think about though.

• These devices currently do not detect or prevent SUDEP. They are designed to detect or alert for seizure-like activity. Yet if a person can get help earlier during a seizure, could death from a seizure be prevented? This is the working theory right now. 
• Not all devices work for all seizure types. Some detect tonic-clonic seizures or seizures with repeated movements, while others may pick up changes in heart rate, skin temperature, or other body changes. If you want to use an alerting device, you must first know your seizure type and what happens during the seizure.
• Some devices can work any time of day and wherever you are. Others are designed to detect seizures at night or when a person is home.
• A person who lives alone may not have anyone who could get an alert and come to help. In this situation, people would need to see if the system could alert an emergency response system or some other back-up system. 
• Check out the costs of buying a device. While some insurance companies may help cover them, usually the person needs to buy it first, then try to get reimbursed. Rules for insurance coverage and costs vary from place to place. 
• Relying on a device is not a sure thing. Devices may not pick up all seizures, and SUDEP can occur without a seizure. This would likely not be picked up by most devices. 
• Read about the different types of devices.

Do I need to have someone in my bedroom with me if I have seizures at night?  

The decision to have someone around at night, such as sharing your living space or bedroom, is a very personal and complex decision. 

• This may be a reasonable and practical option for some people.
• For others, the lack of privacy, independence, and costs associated with this may be unreasonable. 
• It’s wise to have discussions with your health care team about benefits and risks of night time supervision or devices and how it relates to your risk for seizures and SUDEP. 
• If you live with someone, don’t forget to teach them what to do if you have a seizure or are not returning to your baseline after one. Have a seizure response plan that gives simple steps to take and who to call. 

Take Home Points

• Use the SUDEP guideline sponsored by AAN and AES as a starting point to learn about your risks. 
• While this information may feel scary or overwhelming at first, use it to your benefit. You can only make changes and improve your seizures and health when you know what you are facing and feel confident about what to do next. 
• Most importantly, start the conversation with your health care team, family, and friends. Whoever is part of your “team” should be there to support and help you. 

Best wishes for a safe week!

Patty Osborne Shafer
Associate editor, epilepsy.com