Sudden unexpected death in epilepsy (SUDEP) occurs when an individual with epilepsy unexpectedly passes away, even though they seemed to be in their regular state of health. Generally, the death of the individual isn’t a result of an accident or seizure emergency like status epilepticus.
When an autopsy is carried out and no other cause of death is found, the cause is usually determined to be SUDEP.
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Every year, about 1 in 1,000 people with epilepsy die from SUDEP. People that have poorly controlled epilepsy are at an increased risk of SUDEP. A person’s risk of SUDEP varies widely; however, there are several risk factors that make someone more prone to SUDEP.¹
People with epilepsy have an increased risk of SUDEP due to risk factors that can be changed by improving seizure control.
The main risk factor for SUDEP is the frequency of generalized tonic-clonic seizures. Results from one study found that 69% of SUDEP cases in individuals with generalized tonic-clonic seizures and living by themselves could have been prevented if seizure control was better and patients were not living or sleeping alone.² Other associated risk factors include:
Long duration of epilepsy
Young age at epilepsy onset
Lack of nighttime supervision
Taking medications on time and as prescribed may help decrease the risk of SUDEP. If you’re worried about these risk factors, reach out to your healthcare provider.
The risk factors of SUDEP in children are the same as in adults. However, the risk of SUDEP in epileptic children is lower than it is for adults. The risk of SUDEP is around 1 in 4,500 children with epilepsy.³
The cause of SUDEP is unknown, but it is undergoing research. Most of the time, SUDEP occurs during the night, or when the person is sleeping, so the death isn’t usually witnessed. Sometimes evidence of a seizure before death can be found; however, this isn't always the case. This leaves many questions about the exact cause of death to remain unanswered.
Research into the potential causes of SUDEP mostly focuses on the effects of seizures on heart rhythm, brain function, and breathing.⁴
Brain function can be altered during a seizure. Seizures can interfere with or suppress signaling from some regions of the brain that are vital to life. These areas are often responsible for controlling lung function and heart rate, in addition to a number of other vital body functions.
Changes in brain function can cause alterations to a person's heart and lung activity, which can be dangerous.
Alterations to an individual's breathing pattern can be dangerous also. Seizures can cause people to temporarily stop breathing, which is called apnea. If these pauses between breaths become too long, this decreases the amount of oxygen reaching the brain and heart.
Oxygen deficiency is life-threatening if not immediately treated. During seizures, people’s airways can also become blocked, which can lead to an inability to breathe. This is otherwise known as suffocation, which can result in death.
SUDEP can occur as a result of more than one cause. It may result from a combination of factors such as heart arrhythmias, difficulty breathing, and changes in brain function.
Much research remains to be done on the causes of SUDEP, and it is a developing field.
The most effective way to reduce the risk of SUDEP occurring is to decrease seizure risk. To do this, it’s important to discuss a seizure prevention plan with a specialist. This often involves taking actions such as:
Regular visits to your specialist team
Taking medications correctly, at the right time, and with the proper dosage
Consider a range of treatment options if medications aren’t working, such as dietary therapy, the use of medical devices, or surgery
To control seizures, it’s essential that a person with epilepsy has excellent care. It’s important that they follow a good healthy diet, have plenty of rest, and exercise regularly.
Alcohol intake should be kept at a minimum, and recreational drugs should be avoided. Additionally, stress should be minimized.
Potential triggers for seizures should be avoided where possible. It can be helpful for some people to keep note of events that happened before having a seizure, such as tiredness, stress, changes in medication timing or dose, or sickness.
Ensure that your friends, family, and coworkers know what to do when someone has a seizure, so they can be prepared for what happens or provide seizure first aid if necessary.
People who experience seizures should also take extra precautions around bodies of water, such as swimming or bathing, to avoid drowning.
Safety devices can decrease SUDEP risk. They’re usually designed to recognize that a seizure has happened.
Some epilepsy safety devices include the SmartMonitor smartwatch, which has GPS tracking abilities and can put out a seizure alert to family members. Another safety device is the FDA-cleared Embrace smartwatch. This detects convulsive movements and triggers an alarm so the person can be assisted.⁵ ⁶
Developing safety devices to decrease SUDEP risk is an ongoing research area. So far, no evidence exists to show that these devices can eliminate the risk of SUDEP in people who experience seizures at night.
People often try other methods of SUDEP safety, which include using special pillows, but this treatment hasn’t been shown to prevent suffocation or SUDEP.
SUDEP is rare, but it can happen. Risk factors of SUDEP include altered heart rhythms, brain function, and breathing. There are several ways you can help prevent SUDEP, including lifestyle changes and safety devices. It’s important to get help from a health professional if you are concerned about SUDEP.
SUDEP risk for children with epilepsy is lower than in adults and occurs in approximately 1 in 4,500 children with epilepsy. The risk of SUDEP increases if the epilepsy type is more complex. For example, children with Dravet syndrome are at an increased risk.
To get more information about SUDEP or to get support, contact your local Epilepsy Foundation or other organizations listed.
American Epilepsy Society⁷
The Chelsea Hutchison Foundation⁸
Centers for Disease Control and Prevention⁹
North American SUDEP Registry¹¹
FACES (Finding A Cure for Epilepsy and Seizures)¹²
Partners Against Mortality in Epilepsy (PAME)¹³
SUDEP | Epilepsy Foundation
Sudden unexpected death in epilepsy – SUDEP | Epilepsy Action Australia
Embrace 2 | Empatica
Position statement on SUDEP counseling | American Epilepsy Society
Sudden unexpected death in epilepsy (SUDEP) | Centers for Disease Control and Prevention
FACES (Finding a cure for epilepsy and seizures) | NYU Langone Health