According to the CDC (Center for Disease Control and Prevention), studies suggest that 1 in every 1000 people with epilepsy pass away from SUDEP each year. Yet many are still unaware as to what SUDEP is or how they may be affected. Let’s take a closer look at SUDEP and what factors make this more likely to occur.

What is SUDEP and How is It Related to Epilepsy 

SUDEP refers to the sudden, unexpected death of someone who suffered from epilepsy but was otherwise healthy. The term epilepsy refers to a neurological condition that causes seizures. Most often, epilepsy is diagnosed when a person experiences two or more seizures that are more than twenty-four hours apart and are not caused by any particular event such as a stroke, brain injury, infection, fever, or blood sugar abnormalities. That being said, a person can also be diagnosed with epilepsy if they have had one or more unprovoked seizures and there is a significant chance that they will have more in the future. While the specific origins of epilepsy are unknown, epilepsy and seizures are thought to be caused by aberrant signals sent by neurons in the brain. 

When an autopsy is performed on SUDEP patients, no other cause of death is discovered. SUDEP is the leading cause of death for those with uncontrolled seizures. Individuals who have passed away from SUDEP are frequently discovered face-down in bed, without having experienced a convulsive seizure; however, it is not uncommon for there to be a witnessed seizure close to the time of passing.  

What Causes SUDEP?  

Although the exact cause of SUDEP is not currently known, more recent studies indicate that problems with breathing, heart rhythm, and brain function may lead to SUDEP-related deaths. 

Complications In Brain Function     

Seizures can affect the operation of key brainstem areas by suppressing or interfering with them. Breathing and heart rate, as well as other vital physiological functions, are controlled by these areas. As a result, alterations in brain function may lead to harmful changes in breathing and heart rate. It is not uncommon to see a flattening of the brain waves after a seizure. This is known as postictal generalized EEG suppression. This pattern was discovered in the EEG records of persons who died of SUDEP while being monitored.

Breathing Complications 

Breathing problems or difficulties are not uncommon with seizures and are frequently observed in connection with SUDEP. A seizure can cause a person to cease breathing for a short period of time either due to a blockage of the airways or a lack of control in the brain. These breathing pauses can limit the amount of oxygen delivered to the heart and brain if they remain too long. If not treated immediately, a lack of oxygen can be fatal. During a convulsive seizure, a person’s airway may get closed, resulting in asphyxia (an inability to breathe). Seizures can also result in an increase of fluids in the airways or in the lungs, which can make breathing difficult. In some cases of SUDEP, spasms of the larynx and suffocation have been reported.

Complications With Heart Function 

Research indicates that changes in heart function could play a role in how SUDEP occurs. Because seizures have been known to affect heart rhythms, they can occasionally result in a hazardous heart rhythm or cardiac arrest. Cardiac arrhythmias (an irregular heartbeat) can occur during seizures, and seizure-induced physiological changes can exacerbate those arrhythmias, in some cases leading to death.

Takotsubo Syndrome, a disorder in which the heart muscle does not function properly after great stress, can be caused by severe seizures and is believed to have a correlation to SUDEP in some cases. Cardiac failure, shock, arrhythmias, and blood clots account for 8% of deaths in patients with Takotsubo Syndrome. 

Certain genetic heart conditions such as Long QT syndrome, which can also cause sudden death, are also being investigated for their connection to SUDEP. Patients with Long QT syndrome show mutations in a multitude of genes that affect the electrical activity of cardiac cells. Because comparable gene changes might influence brain cell electrical activity, researchers are investigating whether these illnesses increase the risk of seizures and sudden death.

What are the Risk Factors Associated with SUDEP? 

It’s important to know that the severity of an individual’s epilepsy is the most reliable risk factor when it comes to SUDEP. The main risk factors associated with SUDEP are: 

• Uncontrolled and/or frequent seizures 
• Generalized convulsive seizures (also known as tonic clonic or grand mal)  

Other possible risk factors can include:

• Nocturnal seizures 
• Seizures that begin at a young age
• Missed doses of medicine or poor adherence to treatment 
• Over-consumption of alcohol 
• Having lived many years with epilepsy

 Can SUDEP Be Prevented? 

Until further information becomes available, the best strategy to avoid SUDEP is to keep your seizures under excellent control. Most people with epilepsy are now able to control their condition with accessible medications and proper seizure-management techniques. This can include avoiding seizure triggers and enlisting the help of an epilepsy specialist. There are also efforts that a person with severe epilepsy can take to reduce their risk. For example, this can include  epilepsy surgery, neuro-stimulation devices, and even nutritional therapy. 

General steps to reduce the risk of SUDEP may include:

• Taking medication regularly and at the correct dosage
• Referral to an epilepsy specialist who can offer the most up-to-date treatment and diagnostic options
• Consider epilepsy surgery if the condition is non-responsive to medication 
• Avoid known seizure triggers
• Manage stress
• Avoid drinking too much alcohol
• Learn how to control epilepsy via self-management programs
• Get the proper amount of sleep
• Talk to a doctor about a cardiac evaluation 
• Ensure that family, friends, and co-workers are trained in seizure first aid.
• Consider some form of nocturnal supervision as a precaution 

Support and Spreading Awareness

As previously mentioned, there are still many people in the world, even those who are affected by epilepsy who are unaware of SUDEP or the risk factors associated with it. One of the most effective steps we can take towards helping spread awareness for SUDEP is to share accurate information and support foundations who are dedicated to curing epilepsy and stopping SUDEP. 

When searching for information on epilepsy, consider my most recent affiliation, The Cameron Boyce Foundation, that aims to cure epilepsy by sponsoring research, as well as education and awareness campaigns in honor of Cameron Boyce’s legacy: https://www.thecameronboycefoundation.org/