Psychogenic Non-Epileptic Seizures (PNES) are episodes that closely resemble the physical convulsions and altered consciousness of epileptic seizures. Unlike epilepsy, PNES are not caused by abnormal electrical discharges in the brain, but are instead a physical manifestation of underlying psychological distress or trauma. These involuntary events represent a genuine physical reaction of the nervous system to overwhelming stress. While the seizures themselves are not a medical emergency like an epileptic seizure, the condition carries significant health and safety risks, both directly during the event and indirectly through the long-term burden it imposes.
Immediate Physical Dangers During an Event
The most immediate dangers of PNES events are physical injuries sustained during the episode. While features like tongue-biting or loss of bladder control are less common than in epileptic seizures, uncontrolled movements can still result in trauma. A person experiencing PNES may thrash their limbs or stiffen their body, leading to lacerations, bruises, or fractured bones from hitting nearby objects.
The risk of physical harm is increased by the environment in which the event occurs. Falling from a height, such as down stairs, or having an episode near hazards like open flames or water can lead to severe accidental injury or drowning. This fear of unpredictable injury often leads patients to isolate themselves and avoid public spaces, further impacting their quality of life.
Another acute danger arises from the misinterpretation of the PNES event by first responders or emergency room staff. Because PNES can closely mimic status epilepticus, a prolonged and dangerous form of epileptic seizure, patients may receive unnecessary and potentially harmful medical interventions. This iatrogenic harm can include aggressive use of high-dose sedatives, such as benzodiazepines, or intubation for airway protection when it is not clinically necessary. Such procedures carry risks and complications, compounding the patient’s distress.
Risks Associated with Misdiagnosis and Treatment Delays
A major indirect danger of PNES stems from the high rate of diagnostic error, which causes prolonged harm. Due to the striking resemblance to true epilepsy, PNES is frequently misdiagnosed, with studies indicating that up to 75% of patients are initially told they have epilepsy. This diagnostic process can be lengthy, with the average delay in receiving the correct PNES diagnosis ranging from seven to ten years.
During this extended period of misdiagnosis, patients are often prescribed powerful anti-epileptic drugs (AEDs). These medications are ineffective against PNES because the seizures are not caused by electrical brain activity. AEDs carry severe side effects, including cognitive impairment, liver toxicity, mood changes, and weight gain. This unnecessary pharmacotherapy fails to treat the root cause and exposes the patient to medical harm and expense.
The prolonged delay in diagnosis prevents access to the only effective treatment for PNES: psychological and trauma-focused therapies. Conditions like Cognitive Behavioral Therapy (CBT) are necessary to address the underlying psychological distress that manifests as physical seizures. Without this specialized care, the disorder can become deeply entrenched, making successful treatment more challenging once the correct diagnosis is established. The resulting entrenchment and the side effects of incorrect medication diminish the patient’s functional capacity and overall health.
Mortality Risk and Long-Term Psychological Burden
While the PNES event itself is rarely a direct cause of death, the condition is associated with an elevated mortality risk compared to the general population. Studies show that individuals with PNES have a standardized mortality ratio about 2.5 to 2.6 times higher than people without the condition. This increased risk is comparable to the mortality rate seen in patients with drug-resistant epilepsy.
The primary driver of this premature mortality is the long-term psychological burden and its consequences. PNES is associated with high rates of co-occurring mental health conditions, including depression, anxiety disorders, and Post-Traumatic Stress Disorder (PTSD). These comorbidities are often rooted in a history of trauma, a common factor in the development of PNES.
The constant psychological distress, combined with functional impairment caused by the seizures, creates a profound risk for self-harm. PNES episodes lead to a loss of independence, including the ability to drive and job loss, resulting in social isolation and financial strain. This compounding effect of chronic illness, functional decline, and mental health struggles results in a high risk of suicidal ideation and completed suicide. Suicide is the leading cause of premature death in this patient population, accounting for a substantial percentage of external causes of death among PNES patients.