Life after epilepsy: The hidden risks facing patients and familiesMarch 5, 2026
Research indicates that individuals living with epilepsy may face nearly double the risk of motor vehicle crashes, particularly when seizures remain uncontrolled or poorly monitored.
Epilepsy is a chronic neurological disorder associated with an increased risk of numerous psychiatric and medical comorbidities that can adversely affect both quality of life and life expectancy. Post-epilepsy complications arise from multiple factors, including psychosocial challenges, psychiatric disorders, cognitive impairment, injuries, and systemic medical conditions. These complications are real, measurable, and in some cases, life-threatening.
Dr Mohamad Imran Idris, Consultant Neurologist at Sunway Medical Centre, Sunway City shared a powerful clinical experience during the International Epilepsy Day symposium titled Enhancing Epilepsy Awareness and Improving Care in Malaysia. “I was involved in caring for a young boy with epilepsy during my time as a house officer in the ICU. He came to the emergency department with breakthrough seizures and was planned for admission. While waiting for a bed in the ICU, he remained in the emergency department temporarily. Everything seemed fine because he appeared to be sleeping. However, he was actually experiencing one of the serious complications of epilepsy.” He continued, “He was in status epilepticus, but his condition was nonconvulsive. This is one of the rarer complications—nonconvulsive status epilepticus. It is extremely difficult to detect because there are no obvious signs of seizure activity. There were no jerking limb movements. He appeared to be asleep. Only upon very close observation did someone notice subtle eyelid twitching that seemed abnormal. By the time it was recognized that he was in nonconvulsive status epilepticus, a significant amount of time had passed, and he had suffered hypoxic brain injury.” “These are real complications of epilepsy,” Dr Mohamad emphasized. “He was admitted to the ICU, but by the time the seizures were controlled, too much damage had already occurred.” Despite being placed on mechanical ventilation, his neurological injury was irreversible. “After prolonged discussions, the team and the parents made the difficult decision to withdraw life support. He was taken off the ventilator and passed away in his mother’s arms. It was one of the defining moments of my housemanship and profoundly reinforced how serious epilepsy complications can be.” Psychosocial complications Among the most far-reaching post-epilepsy complications are psychosocial challenges. Effective management must extend beyond seizure control to include social, emotional, and psychological dimensions. Compared with unaffected adults, individuals with epilepsy often experience:
These burdens can significantly diminish quality of life. Employment challenges Employment status is frequently negatively affected by epilepsy, even when seizures are infrequent or well-controlled. Studies published in Neurology Asia report that epilepsy significantly impairs an individual’s ability to obtain and maintain employment. Workplace stigma, employer misconceptions, and safety concerns often contribute to job insecurity. An increasingly relevant issue is difficulty obtaining insurance following a diagnosis of epilepsy. Health, life, and disability insurance coverage may become more limited or expensive, further compounding financial stress. Driving and loss of independence For many newly diagnosed patients, the most immediate and tangible loss is the inability to drive. In societies where personal transportation is essential, losing driving privileges can profoundly affect independence and livelihood. If a person cannot drive to work, their employment may be jeopardized. In some cases, individuals may be made redundant simply because they cannot reliably commute. However, driving with uncontrolled seizures presents risks not only to the individual but also to the public. While physicians may not always have a legal obligation to report drivers with epilepsy, they carry a strong ethical responsibility to advise against driving when seizures remain uncontrolled. Dr Mohamad recalled a case involving a bus driver with epilepsy who transported young children despite ongoing seizures. Regulatory gaps and insufficient enforcement can allow such situations to occur, highlighting the importance of stricter monitoring and patient education. Research suggests that the relative risk of motor vehicle crashes among individuals with epilepsy may be approximately twice that of other drivers. The most important predictor of crash risk is the seizure-free interval—the length of time since the last seizure. Longer seizure-free periods significantly reduce driving risk. Marriage and relationships Marriage rates among individuals with epilepsy are lower compared with the general population. Data from Neurology Asia indicate that marriage rates among people with epilepsy are approximately 80% of those expected in the general population. Furthermore, among those who do marry, divorce rates are reported to be higher—approximately 9% compared with 0.7% in the general population. Stigma, psychological strain, and financial pressures may contribute to these differences. Health-related behaviors Patients with epilepsy are more likely to exhibit suboptimal health behaviors, including:
The causes are multifactorial. Epilepsy itself may influence behavior, potentially increasing impulsivity or risk-taking tendencies. Anti-seizure medications may also contribute by inducing mood changes, anxiety, or depression. In addition, chronic illness can lead to reactive depression. Just as individuals living with chronic pain may experience depressive symptoms over time, patients living with recurrent seizures may develop similar psychological responses. Identifying sources of psychosocial stress is essential. Patients often express concerns about independence, health security, relationships, and personal growth. For individuals with stress-induced seizures, stress reduction strategies, biofeedback, and relaxation therapy may provide benefit. Psychiatric comorbidities Psychiatric disorders, particularly depression and anxiety, occur at significantly higher rates in individuals with epilepsy. Recognition and treatment of psychiatric comorbidities are essential components of comprehensive epilepsy care. The reported prevalence of depression in people with epilepsy ranges from 13% to 35%, depending on diagnostic criteria and assessment methods. Some studies classify mood disturbances related to chronic illness as depression, while others apply stricter psychiatric definitions. Regardless of classification differences, the increased risk is clear. Risk factors for depression include:
Adverse effects of anti-seizure medications The mood-altering effects of anti-seizure medications should not be overlooked. Medications associated with negative psychotropic effects include:
In some cases, medication effects are severe enough to trigger suicidal ideation. Iatrogenic mood worsening—negative emotional changes directly caused by medical treatment—may occur due to:
Careful medication review is critical when new psychiatric symptoms develop. Psychotic disorders The incidence of psychotic disorders is two- to three-fold higher in individuals with epilepsy compared with the general population. Psychosis may occur:
Prompt recognition and psychiatric collaboration are essential for optimal outcomes. Cognitive impairment Cognitive impairment is common in epilepsy and may be present at diagnosis. Comprehensive neuropsychological testing often detects subtle deficits across multiple domains. Contributing factors include:
All anti-seizure medications can potentially impair cognition. As Dr Mohamad explained, epilepsy involves excessive neuronal activity. Medications designed to calm this activity cannot selectively target only pathological firing; they may also affect normal cognitive processes such as memory and attention. The severity of cognitive impairment may depend on:
Medications commonly associated with cognitive impairment include phenobarbital, benzodiazepines, topiramate, and zonisamide. Topiramate, in particular, may cause:
Injury risk Seizure-related injuries are significantly more common in individuals with epilepsy. Elevated risks include:
Individuals with poorly controlled seizures face the highest risk. For example, swimming should be supervised if seizures are not fully controlled. However, excessive activity restriction is generally unnecessary for most patients and may negatively affect quality of life. A balanced, individualized approach is recommended. Sleep, cardiovascular, and bone health Additional post-epilepsy complications include:
Sleep disturbances may worsen seizure control and contribute to mood instability. Certain anti-seizure medications may negatively affect bone density, increasing fracture risk. Cardiovascular risks may be influenced by shared biological mechanisms, lifestyle factors, or medication effects. Premature mortality and SUDEP Epilepsy is associated with increased premature mortality. One of the most serious complications is sudden unexpected death in epilepsy (SUDEP). While relatively rare, SUDEP is a devastating outcome and is more common in individuals with poorly controlled generalized tonic-clonic seizures. Post-epilepsy complications extend far beyond seizures. They include psychosocial challenges, psychiatric disorders, cognitive impairment, injury risk, systemic medical conditions, and premature mortality. Comprehensive care must therefore address not only seizure control but also mental health, social support, safety counseling, and long-term medical monitoring to improve outcomes and preserve quality of life for individuals living with epilepsy. |
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