Table of ContentsView AllTable of ContentsWhat Is SUDEP?CausesRisk FactorsReducing Your RiskQuestions to AskFrequently Asked Questions
Table of ContentsView All
View All
Table of Contents
What Is SUDEP?
Causes
Risk Factors
Reducing Your Risk
Questions to Ask
Frequently Asked Questions
Sudden unexpected death in epilepsy (SUDEP) is when an otherwise healthy person withepilepsydies without a known cause, such as injury or drowning. Usually, death occurs during or right after a seizure, but it can occur without a seizure. The condition is not well-understood.
This article will discuss SUDEP, its possible causes, and some things that may reduce the risk.
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SUDEP describes the death of a person withepilepsywhen no other cause can be determined. It is the leading cause of death in people with uncontrolled seizures.It affects 1 in 1,000 people with epilepsy each year.
What Causes SUDEP?
An exact cause of SUDEP has not been established. Why it happens is not well-understood, but researchers have identified some possible reasons.
Breathing
Seizures can causeapnea(temporarily stopping breathing). A pause in breathing that is too long can cause a dangerous lack of oxygen in the blood, preventing enough oxygen from getting to the heart or brain.A convulsive seizure can also cause the person’s airway to become blocked, leading to suffocation.
Brain Function
Seizures may interfere with or suppress functioning in areas of the brain stem that are responsible for breathing, heart rate, and other important functions. This could cause dangerous changes in breathing and heart rate.
Heart Rhythm
While rare, a seizure can cause a dangerous heart rhythm or cardiac arrest.
Other Causes
Researchers are also exploring other possible causes they haven’t identified yet. One area of interest is the noted tendency of people who die of SUDEP to be found lying prone (on their stomachs) in bed.
It’s possible that in this position, during a seizure, the mouth and nose may become partially or fully obstructed and it may be more difficult to expand the chest. If the person is unable to change positions, asphyxia (suffocation) or rebreathing (breathing back in exhaled air) could occur, causing a lack of adequate oxygen to the body.
Because SUDEPoften occurs at night, researchers are looking into a possible connection between SUDEP and the circadian (sleep-wake cycle) processes.Breathing during sleep is different from breathing while awake.Apnea, including obstructive sleep apnea, can occur. A person who is asleep may also be less likely to respond to and correct breathing difficulties.
Currently, an explanation for why SUDEP often occurs at night or during sleep has not been fully established, and the research is ongoing.
Factors that may increase the risk of SUDEP for people with epilepsy include:
SUDEP in ChildrenAccording to some research, SUDEP is less common inyounger children, but other studies have found a similar rate to that of adults. Children who have uncontrolled epilepsy or who experience frequent seizures are at the highest risk.Other risk factors may include:Early onset of epilepsyThe presence of developmental disabilitiesSome steps you can take that may reduce the risk of SUDEP include:Talk to your child’s healthcare provider about the risk of SUDEP.Make sure your child is following theirtreatment planexactly as prescribed and not missing doses.Check in with their healthcare provider regularly to discuss if adjustments are needed, particularly if they are still having seizures.Avoid seizure triggers as much as possible.Help your child get enough good quality sleep.Make sure all the adults in the child’s life are trained in seizure first aid.Talk to their healthcare provider about if seizure detection devices may be beneficial.
SUDEP in Children
According to some research, SUDEP is less common inyounger children, but other studies have found a similar rate to that of adults. Children who have uncontrolled epilepsy or who experience frequent seizures are at the highest risk.Other risk factors may include:Early onset of epilepsyThe presence of developmental disabilitiesSome steps you can take that may reduce the risk of SUDEP include:Talk to your child’s healthcare provider about the risk of SUDEP.Make sure your child is following theirtreatment planexactly as prescribed and not missing doses.Check in with their healthcare provider regularly to discuss if adjustments are needed, particularly if they are still having seizures.Avoid seizure triggers as much as possible.Help your child get enough good quality sleep.Make sure all the adults in the child’s life are trained in seizure first aid.Talk to their healthcare provider about if seizure detection devices may be beneficial.
According to some research, SUDEP is less common inyounger children, but other studies have found a similar rate to that of adults. Children who have uncontrolled epilepsy or who experience frequent seizures are at the highest risk.
Other risk factors may include:
Some steps you can take that may reduce the risk of SUDEP include:
How to Reduce Your Risk
SUDEP can’t always beprevented, but there are some things that can be done which may reduce the risk.
Seizure Control Medical Treatment
The most recommended way to reduce the risk of SUDEP is to control your seizures. It’s important totake your medicationas prescribed (don’t miss doses), and to check in with your healthcare provider regularly to see if adjustments are needed.
If seizures can’t be controlled with medication, other treatments may be tried that include:
Avoid Seizure Triggers
If you know what they are, avoid anything that makes you more likely to have a seizure.Even if you can’t avoid them, knowing what triggers your seizures can help you be better prepared.
Some commonly reported seizure triggers include:
Lifestyle Changes
Some lifestyle choices that may help with seizure control include:
Because SUDEP often occurs at night, there are some sleep-specific steps that may reduce your risk, including:
Train Family Members and Coworkers in Seizure First Aid
It’s important to ensure family, friends, and those who regularly spend time with you know seizure first aid and emergency resuscitation measures (including CPR and defibrillator use).
Proper training on what to do is necessary, but some general tips for how to help someone who is having a seizure include:
If a person has ageneralized convulsive seizure, they may fall, shake or jerk, cry out, and become unaware of their surroundings. This type of seizure requires steps in addition to the general guidelines for seizure. To help someone having this type of seizure, do the following:
Donot:
Call 911 if:
Seizure Action PlanThe Epilepsy Foundation offers Seizure Action Plan instructions and a template you can use to help your loved ones be prepared.
Seizure Action Plan
The Epilepsy Foundation offers Seizure Action Plan instructions and a template you can use to help your loved ones be prepared.
Talking to Your Healthcare Provider About SUDEP
Talking to your healthcare provider about SUDEP can help you learn about your risk and discuss measures you can take that may lower your risk.
Some questions you may want to ask your healthcare provider include:
This discussion may take some time. Let your healthcare provider know when you book your appointment or at the beginning of the appointment that you have questions about SUDEP, or book a separate appointment so you have plenty of time.
Summary
SUDEP is the death of an otherwise healthy person withepilepsywhen no other cause can be determined. The exact cause of SUDEP is not known. Frequent and/or uncontrolled general convulsive seizures appear to be the biggest risk factor for SUDEP.
SUDEP can’t always be prevented, but making sure seizures are under control may reduce the risk. It’s also important for friends and family to know how to perform seizure first aid. Talking to your healthcare provider can help youfeel well-informedand may bring you some peace of mind.
Frequently Asked QuestionsThe exact number isn’t known, but it’s estimated that about 1 in 1,000 people with epilepsy may die from SUDEP each year. This number is increased for people with epilepsy whose seizures are not controlled.Learn MoreRisks and Complications of SeizuresThese pillows are made for people who are at risk for suffocation, but there isn’t scientific evidence to support using them to prevent SUDEP. If you think they might be beneficial to you or a loved one, talk to your healthcare provider.Learn MoreWhy Do People Die in Their Sleep?Some studies suggest genetic factors are involved in SUDEP, but more research is needed.Learn MoreCauses and Risk Factors of Epilepsy
The exact number isn’t known, but it’s estimated that about 1 in 1,000 people with epilepsy may die from SUDEP each year. This number is increased for people with epilepsy whose seizures are not controlled.Learn MoreRisks and Complications of Seizures
The exact number isn’t known, but it’s estimated that about 1 in 1,000 people with epilepsy may die from SUDEP each year. This number is increased for people with epilepsy whose seizures are not controlled.
Learn MoreRisks and Complications of Seizures
These pillows are made for people who are at risk for suffocation, but there isn’t scientific evidence to support using them to prevent SUDEP. If you think they might be beneficial to you or a loved one, talk to your healthcare provider.Learn MoreWhy Do People Die in Their Sleep?
These pillows are made for people who are at risk for suffocation, but there isn’t scientific evidence to support using them to prevent SUDEP. If you think they might be beneficial to you or a loved one, talk to your healthcare provider.
Learn MoreWhy Do People Die in Their Sleep?
Some studies suggest genetic factors are involved in SUDEP, but more research is needed.Learn MoreCauses and Risk Factors of Epilepsy
Some studies suggest genetic factors are involved in SUDEP, but more research is needed.
Learn MoreCauses and Risk Factors of Epilepsy
14 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Centers for Disease Control and Prevention.Sudden unexpected death in epilepsy.Dlouhy BJ, Gehlbach BK, Richerson GB.Sudden unexpected death in epilepsy: basic mechanisms and clinical implications for prevention.J Neurol Neurosurg Psychiatry. 2016;87(4):402-413. doi:10.1136/jnnp-2013-307442Centers For Disease Control and Prevention.Sudden unexpected death in epilepsy.Epilepsy Foundation.SUDEP.Joyal KG, Kreitlow BL, Buchanan GF.The role of sleep state and time of day in modulating breathing in epilepsy: implications for sudden unexpected death in epilepsy.Front Neural Circuits. 2022;16:983211. doi:10.3389/fncir.2022.983211SUDEP Action.What is SUDEP?SUDEP Action.Risk in childhood & adolescence.American Academy of Pediatrics.Sudden unexpected death in epilepsy (SUDEP).Epilepsy Foundation.Seizure triggers.Epilepsy Foundation.Can getting good care of my epilepsy prevent SUDEP?American Academy of Pediatrics.Why it matters to talk about sudden unexpected death in epilepsy.Centers For Disease Control and Prevention.First aid for seizures.Epilepsy Toronto.SUDEP.Epilepsy Foundation.Talking to your doctor about SUDEP.
14 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Centers for Disease Control and Prevention.Sudden unexpected death in epilepsy.Dlouhy BJ, Gehlbach BK, Richerson GB.Sudden unexpected death in epilepsy: basic mechanisms and clinical implications for prevention.J Neurol Neurosurg Psychiatry. 2016;87(4):402-413. doi:10.1136/jnnp-2013-307442Centers For Disease Control and Prevention.Sudden unexpected death in epilepsy.Epilepsy Foundation.SUDEP.Joyal KG, Kreitlow BL, Buchanan GF.The role of sleep state and time of day in modulating breathing in epilepsy: implications for sudden unexpected death in epilepsy.Front Neural Circuits. 2022;16:983211. doi:10.3389/fncir.2022.983211SUDEP Action.What is SUDEP?SUDEP Action.Risk in childhood & adolescence.American Academy of Pediatrics.Sudden unexpected death in epilepsy (SUDEP).Epilepsy Foundation.Seizure triggers.Epilepsy Foundation.Can getting good care of my epilepsy prevent SUDEP?American Academy of Pediatrics.Why it matters to talk about sudden unexpected death in epilepsy.Centers For Disease Control and Prevention.First aid for seizures.Epilepsy Toronto.SUDEP.Epilepsy Foundation.Talking to your doctor about SUDEP.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Centers for Disease Control and Prevention.Sudden unexpected death in epilepsy.Dlouhy BJ, Gehlbach BK, Richerson GB.Sudden unexpected death in epilepsy: basic mechanisms and clinical implications for prevention.J Neurol Neurosurg Psychiatry. 2016;87(4):402-413. doi:10.1136/jnnp-2013-307442Centers For Disease Control and Prevention.Sudden unexpected death in epilepsy.Epilepsy Foundation.SUDEP.Joyal KG, Kreitlow BL, Buchanan GF.The role of sleep state and time of day in modulating breathing in epilepsy: implications for sudden unexpected death in epilepsy.Front Neural Circuits. 2022;16:983211. doi:10.3389/fncir.2022.983211SUDEP Action.What is SUDEP?SUDEP Action.Risk in childhood & adolescence.American Academy of Pediatrics.Sudden unexpected death in epilepsy (SUDEP).Epilepsy Foundation.Seizure triggers.Epilepsy Foundation.Can getting good care of my epilepsy prevent SUDEP?American Academy of Pediatrics.Why it matters to talk about sudden unexpected death in epilepsy.Centers For Disease Control and Prevention.First aid for seizures.Epilepsy Toronto.SUDEP.Epilepsy Foundation.Talking to your doctor about SUDEP.
Centers for Disease Control and Prevention.Sudden unexpected death in epilepsy.
Dlouhy BJ, Gehlbach BK, Richerson GB.Sudden unexpected death in epilepsy: basic mechanisms and clinical implications for prevention.J Neurol Neurosurg Psychiatry. 2016;87(4):402-413. doi:10.1136/jnnp-2013-307442
Centers For Disease Control and Prevention.Sudden unexpected death in epilepsy.
Epilepsy Foundation.SUDEP.
Joyal KG, Kreitlow BL, Buchanan GF.The role of sleep state and time of day in modulating breathing in epilepsy: implications for sudden unexpected death in epilepsy.Front Neural Circuits. 2022;16:983211. doi:10.3389/fncir.2022.983211
SUDEP Action.What is SUDEP?
SUDEP Action.Risk in childhood & adolescence.
American Academy of Pediatrics.Sudden unexpected death in epilepsy (SUDEP).
Epilepsy Foundation.Seizure triggers.
Epilepsy Foundation.Can getting good care of my epilepsy prevent SUDEP?
American Academy of Pediatrics.Why it matters to talk about sudden unexpected death in epilepsy.
Centers For Disease Control and Prevention.First aid for seizures.
Epilepsy Toronto.SUDEP.
Epilepsy Foundation.Talking to your doctor about SUDEP.
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