How Many People Die From Seizures and Why?

A seizure is a temporary disruption of brain activity caused by abnormal electrical signals. These events can manifest in various ways, from subtle changes in awareness or behavior to uncontrolled movements. While many seizures are brief, they are a symptom of an underlying neurological condition and can lead to serious complications, including death. Death from a seizure is uncommon, but recognizing associated risks is important for safety.

Statistics on Seizure-Related Mortality

Individuals with epilepsy, a condition characterized by recurrent seizures, face a higher risk of premature death compared to the general population. The overall mortality rate for people with epilepsy is estimated to be two to three times higher than those without the condition. Globally, approximately 140,000 individuals with epilepsy died in 2021. In the United States, over 4,100 deaths listed epilepsy as an underlying or contributing cause in 2017, with a notable increase in mortality rates between 1999 and 2017.

Estimates for seizure-related deaths can vary due to challenges in data collection and reporting. Epilepsy may be underreported on death certificates, making it difficult to ascertain the precise number of direct seizure-related fatalities. Despite these reporting challenges, available data consistently indicate that premature mortality in individuals with epilepsy is a concern, highlighting the importance of understanding the causes and mitigating factors.

Key Causes of Seizure-Related Deaths

Seizures can lead to death through several distinct mechanisms. One of the most recognized is Sudden Unexpected Death in Epilepsy (SUDEP), the most frequent direct cause of epilepsy-related death. SUDEP occurs when a person with epilepsy dies suddenly and unexpectedly, with no other cause found during post-mortem examination. Research suggests SUDEP often involves a complex interplay of respiratory, cardiac, and brain function issues, frequently occurring during or immediately after a generalized tonic-clonic seizure, especially during sleep.

Another serious and potentially fatal event is status epilepticus. This refers to a prolonged seizure lasting more than five minutes, or multiple seizures occurring without a return to consciousness. Status epilepticus is a medical emergency that can lead to permanent brain damage or death if not treated promptly. Mortality rates for status epilepticus vary, ranging from 4.6% to 39% depending on the cause, duration, and age of the individual.

Accidents and injuries during a seizure also contribute to mortality. Individuals may fall, leading to head trauma or broken bones. Drowning is a concern if a seizure occurs near water, as the risk for people with epilepsy is significantly higher. Burns from hot objects are also a risk.

Underlying health conditions increase mortality risk. Seizures can worsen pre-existing heart problems, leading to dangerous rhythms or cardiac arrest. They can also impair respiratory function, causing breathing pauses or irregular patterns, especially for those with lung conditions. The stress of seizures can worsen other chronic diseases, contributing to a fatal outcome.

Factors Increasing Risk

Several factors can significantly increase an individual’s risk of seizure-related death. The type and frequency of seizures play a substantial role, with generalized tonic-clonic seizures (GTCS) being the most significant risk factor for Sudden Unexpected Death in Epilepsy (SUDEP). The more frequent and uncontrolled these seizures are, the higher the risk. Even a few GTCS per year can substantially elevate the risk.

Seizures occurring during sleep, known as nocturnal seizures, are another important risk factor for SUDEP. These events are often unwitnessed, making timely intervention difficult. Research indicates that a history of nocturnal seizures is an independent risk factor for SUDEP.

The age at which seizures begin and the duration of epilepsy also influence risk. Having seizures from a young age and living with epilepsy for many years are associated with an increased likelihood of premature mortality. The highest mortality rates are often observed in the initial years following an epilepsy diagnosis, with rates generally decreasing over time as treatment stabilizes.

Poor adherence to anti-seizure medications is a modifiable risk factor. Missing prescribed doses can lead to breakthrough seizures, increasing the chances of severe events and associated mortality. Conversely, consistently taking medication as directed is a primary way to mitigate risk.

Comorbid health conditions can further complicate epilepsy and raise mortality risk. Individuals with pre-existing heart or respiratory issues may be more vulnerable to the physiological stresses induced by seizures. Psychiatric comorbidities, such as depression and substance use disorders, are also associated with increased mortality among people with epilepsy, often due to their impact on overall health and adherence to treatment.

Strategies for Minimizing Risk

Proactive measures and consistent management are important for reducing the risks associated with seizures. The most significant strategy involves strict adherence to prescribed anti-seizure medications. Taking medication as directed helps maintain stable drug levels in the body, which is crucial for preventing breakthrough seizures and lowering the risk of severe events like status epilepticus and Sudden Unexpected Death in Epilepsy (SUDEP).

Seizure monitoring is another important aspect, particularly for nocturnal seizures which often occur unwitnessed. Various devices are available, including bed monitors that detect repetitive movements and wearable devices that can sense changes in heart rate or motion. These monitors can alert caregivers, enabling timely intervention. While no monitor guarantees complete safety, they can offer reassurance and potentially reduce risk by prompting assistance during a seizure.

Lifestyle management plays a supporting role in seizure control. Identifying and avoiding individual seizure triggers, such as sleep deprivation, excessive alcohol consumption, or significant stress, can help reduce seizure frequency. Maintaining a consistent sleep schedule, engaging in regular exercise, and practicing stress-reduction techniques like meditation or yoga can contribute to overall well-being and potentially lessen seizure susceptibility.

Regular medical follow-ups with neurologists are essential for optimizing seizure management. These appointments allow healthcare providers to assess seizure control, adjust medication dosages, and discuss any emerging concerns or changes in a person’s condition. Open communication with the medical team ensures that treatment plans remain effective and tailored to individual needs.

Emergency protocols are critical for managing acute seizure events. Everyone living with epilepsy, as well as their caregivers, should be familiar with seizure first aid, including how to safely position someone during a convulsive seizure and when to seek emergency medical help. Prompt recognition and treatment of status epilepticus, typically with rescue medications, can prevent severe complications and improve outcomes.

For individuals with drug-resistant epilepsy, advanced therapies may be considered. Surgical options, such as resective surgery to remove the seizure-generating area of the brain, can be effective for select candidates. Device therapies, including Vagus Nerve Stimulation (VNS), Responsive Neurostimulation (RNS), and Deep Brain Stimulation (DBS), offer alternative approaches by delivering electrical stimulation to specific brain regions to reduce seizure frequency and severity. These treatments are often considered when medications alone do not adequately control seizures.