Epilepsy is a common neurological disorder defined by recurrent, unpredictable seizures. Although most people with epilepsy lead full lives, the condition is associated with a premature mortality rate two to three times higher than the general population. The risk of death is low but not zero, and understanding how epilepsy can lead to death is crucial for prevention. Mortality is generally classified into three major categories: sudden physiological failure, prolonged seizure complications, and seizure-related accidents.
Sudden Unexpected Death in Epilepsy (SUDEP)
Sudden Unexpected Death in Epilepsy (SUDEP) is defined as the death of a person with epilepsy where no other cause is found after a complete post-mortem examination. It is the leading cause of death directly related to epilepsy. Most cases occur following a generalized tonic-clonic seizure (GTC), the type involving full-body convulsions.
The exact mechanism is not fully understood, but research points to a failure of the body’s automatic systems controlling breathing and heart function. The prevailing hypothesis suggests that a GTC seizure causes post-ictal central apnea, where breathing stops or becomes severely depressed immediately afterward. This respiratory depression leads to a lack of oxygen, causing severe cardiac dysfunction and death.
Seizures severely disrupt the autonomic nervous system, which governs involuntary functions like heart rate and respiration. GTC seizures are particularly risky because they propagate activity to brainstem circuits that control breathing. Many SUDEP cases occur during sleep, often with the person found in a prone position, suggesting nocturnal monitoring may be protective.
Fatal Complications of Status Epilepticus
Status Epilepticus (SE) is a life-threatening neurological emergency defined as a seizure lasting longer than five minutes, or a series of seizures without a return to normal consciousness. Unlike SUDEP, death from SE results from the prolonged stress and systemic failure caused by continuous seizure activity. Mortality rates for a first episode of generalized convulsive SE range from 15% to 20% in adults.
Prolonged convulsions push the body into a state of extreme metabolic demand. This intense activity leads to systemic failures, including hyperthermia (a rapid increase in body temperature). Continuous muscle contraction can also cause rhabdomyolysis, the breakdown of muscle tissue that releases harmful proteins and damages the kidneys.
The excessive electrical activity itself causes neurological damage and rapid neuronal death. Systemic stress affects the cardiovascular system, potentially causing cardiac arrhythmias and cardiovascular collapse. These complications, such as respiratory failure and organ dysfunction, result from the body being unable to sustain the massive energy expenditure of the prolonged seizure state.
Mortality from Seizure-Related Accidents
A person with epilepsy faces an increased risk of death from accidents directly caused by a seizure event. The loss of consciousness and lack of motor control during a seizure place the individual in immediate danger based on their environment. This category of mortality depends entirely on the circumstances surrounding the seizure.
Drowning is a common accidental cause of death, with the risk 15 to 19 times higher for people with epilepsy. This risk exists even in shallow water; two-thirds of drowning accidents occur in the bathtub. The sudden loss of consciousness during bathing or swimming prevents the person from protecting their airway.
Other fatal accidents include falls and burns. A seizure can cause a fall from a height or onto a hard surface, leading to severe head trauma. Burns can occur if a seizure happens while the person is cooking or near a heat source like a stove or fireplace. Modifying the living environment to create seizure-safe spaces is essential for prevention.
Reducing Mortality Risk
The single most effective action to reduce mortality risk is achieving optimal seizure control through strict adherence to anti-epileptic medication. Consistent medication use minimizes the frequency of generalized tonic-clonic seizures, which are the highest risk factor for SUDEP and SE. Regular follow-up with a neurologist allows for timely adjustments to the treatment plan.
Safety Measures and Monitoring
Specific safety measures can mitigate the risk of accidental death. To reduce drowning risk, individuals should never swim or bathe alone, and using a shower instead of a bath is recommended. Using seizure detection devices, especially at night, can alert a caregiver to a convulsive event. This allows for intervention that may prevent post-seizure respiratory failure.
Emergency Planning and Lifestyle
Having a clear emergency plan for Status Epilepticus is crucial. This plan should include having prescribed rescue medications readily available and knowing when to administer them to stop a prolonged seizure before systemic complications occur. Lifestyle factors, such as avoiding sleep deprivation and excessive alcohol consumption, are also advised, as they can act as seizure triggers.