In short
Psychogenic nonepileptic seizures (PNES), also called functional seizures, are episodes that look like epileptic seizures but have a completely different cause—they stem from psychological distress rather than abnormal electrical activity in the brain. Getting the right diagnosis matters greatly because it changes everything about how the condition should be treated.
Key points
- Video EEG monitoring in an epilepsy monitoring unit is the gold standard for diagnosing PNES and cannot be replaced by routine office-based testing
- Up to 30 percent of people referred to epilepsy centers for "difficult to treat seizures" actually have PNES, not epilepsy
- PNES episodes are real and involuntary—you are not faking them, and they are not under your conscious control
- Certain features like closed eyes during episodes, side-to-side head movements, and episodes lasting longer than 10 minutes suggest PNES, but video EEG is still needed for confirmation
- About 10 to 15 percent of people with PNES also have epilepsy, making it crucial to distinguish which episodes are which type
- Early and accurate diagnosis greatly improves outcomes by allowing you to stop ineffective epilepsy medications and begin appropriate psychological treatment
- A comprehensive psychological evaluation is a critical part of the diagnostic process because PNES stems from psychological distress
- Clinical trials for PNES require video EEG confirmation of diagnosis plus detailed baseline assessments of seizure frequency and psychological functioning
Introduction: Who Should Undergo Diagnostics
If you are experiencing seizure-like episodes that are not responding to epilepsy medications, it is important to seek a thorough diagnostic evaluation. Many people with PNES are initially misdiagnosed with epilepsy and treated with antiseizure medications that do not help and may even cause harmful side effects. This misdiagnosis can continue for years, delaying the appropriate care that could actually improve your condition.
You should consider seeking diagnostics if your seizures have unusual features that differ from typical epileptic seizures. For example, if your episodes last longer than 10 minutes, if you retain some awareness during what looks like a convulsive episode, or if you close your eyes during the event, these might be clues that warrant further investigation. Additionally, if you have a history of psychological trauma, anxiety, depression, or chronic stress, and you are experiencing seizure-like episodes, a comprehensive evaluation becomes even more important.
It is especially advisable to undergo proper diagnostics if you have been taking epilepsy medications without improvement in your seizure frequency. This situation is common among people with PNES, who often go through escalating doses of multiple medications without benefit. The sooner an accurate diagnosis is made, the sooner you can stop taking unnecessary medications and begin appropriate treatment that addresses the true cause of your episodes.
Healthcare providers recommend that anyone admitted to an emergency department repeatedly for seizures, or anyone whose seizures are considered "refractory" (meaning they do not respond to standard epilepsy treatment), should be evaluated for PNES. This is particularly true if routine electroencephalography (EEG, a test that measures electrical activity in the brain) and brain imaging studies come back normal, yet seizures continue.
Diagnostic Methods
The gold standard for diagnosing PNES is video EEG monitoring conducted in a specialized unit called an epilepsy monitoring unit. During this test, you are admitted to the hospital for continuous monitoring that can last from one to several days. Throughout this time, video cameras record your behavior while EEG electrodes attached to your scalp continuously measure the electrical activity in your brain. The goal is to capture one or more of your typical seizure episodes on video while simultaneously recording your brain waves.
What makes video EEG monitoring so valuable is that it allows doctors to see exactly what happens during your episodes while checking whether there is abnormal electrical activity in your brain at the same time. In epileptic seizures, there are distinctive patterns of abnormal electrical discharges that appear on the EEG during the seizure. In PNES, the EEG remains normal even though you are having what looks like a seizure. This difference is the key to making an accurate diagnosis.
Before undergoing video EEG monitoring, your doctor will take a detailed history of your seizures. They will ask you to describe what happens during your episodes, how long they last, what triggers them, and how you feel afterwards. It is extremely helpful if family members or friends who have witnessed your seizures can also provide descriptions, as you may not remember everything that happens during an episode. Some people find it useful to record their seizures on a smartphone, which can be shown to the doctor.
During the clinical evaluation, doctors look for specific features that are more common in PNES than in epileptic seizures. These include gradual onset of the episode rather than sudden onset, eyes being closed during the episode (whereas eyes are typically open during epileptic seizures), side-to-side head movements, irregular jerking movements that are not synchronized, pelvic thrusting movements, and episodes that last longer than two to three minutes. However, none of these features alone can definitively diagnose PNES, which is why video EEG monitoring is essential.
Another important clue is what happens after the episode ends. People with epileptic seizures typically experience a postictal state, meaning they are confused, drowsy, or disoriented for a period after the seizure. In contrast, people with PNES often recover more quickly and may not have this period of confusion. Additionally, during PNES episodes, people are less likely to bite their tongue, lose bladder control, or injure themselves from falling, although these things can still occasionally happen.
Doctors will also conduct routine tests to rule out epilepsy and other neurological conditions. These typically include a standard EEG performed in an outpatient setting, where electrodes are placed on your scalp and your brain activity is recorded for about 30 minutes to an hour. They may also order brain imaging studies such as magnetic resonance imaging (MRI) or computed tomography (CT) scans to check for any structural abnormalities in the brain that could cause seizures. In PNES, these tests usually come back normal.
The diagnostic process should also include a comprehensive psychological evaluation. Because PNES is related to psychological distress, understanding your mental health history, past traumatic experiences, current stressors, and any symptoms of anxiety, depression, or post-traumatic stress disorder is crucial. This evaluation helps not only in confirming the diagnosis but also in planning appropriate treatment. Many people with PNES have experienced physical, sexual, or emotional abuse, chronic stress, or other difficult life events.
In some cases, doctors may use additional techniques during video EEG monitoring to try to trigger your typical episodes. These techniques, called activation procedures, might include having you hyperventilate (breathe rapidly and deeply), look at flashing lights, or undergo suggestion techniques where you are told that a harmless stimulus might trigger an episode. These methods can help capture events more quickly during the monitoring period, but they must be done carefully and ethically.
It is important to know that PNES and epilepsy can occur together in the same person. Studies show that about 10 to 15 percent of people with PNES also have epileptic seizures. This makes diagnosis more challenging because doctors must determine which episodes are epileptic and which are nonepileptic. This is another reason why capturing multiple episodes on video EEG is so valuable—it allows doctors to see whether all your seizures are the same or whether you have more than one type.
Diagnostics for Clinical Trial Qualification
When clinical trials are conducted to test new treatments for PNES, researchers use specific diagnostic criteria to determine who can participate. The most fundamental requirement for enrollment in a PNES clinical trial is confirmation of the diagnosis through video EEG monitoring. This means that participants must have had at least one typical seizure episode captured on video while undergoing simultaneous EEG recording, with the EEG showing no epileptiform abnormalities during the event.
Clinical trials typically require that the video EEG documentation was performed at a qualified epilepsy monitoring unit with experienced epileptologists (neurologists who specialize in epilepsy) who can accurately distinguish between epileptic and nonepileptic events. The video recordings and EEG data are often reviewed by multiple experts to ensure the diagnosis is correct. This level of certainty is necessary because treating people who actually have epilepsy with therapies designed for PNES could be harmful and ineffective.
Beyond confirming the PNES diagnosis, clinical trials usually require a comprehensive baseline evaluation of seizure frequency. Participants are often asked to keep detailed seizure diaries for several weeks or months before the trial begins. These diaries record how many episodes occur, how long they last, what symptoms are present, and what might have triggered them. This baseline information is essential for determining whether the treatment being tested actually reduces seizure frequency.
Clinical trials for PNES also typically include psychological screening and assessment. Because PNES is understood as a form of conversion disorder (a condition where psychological distress manifests as physical symptoms), researchers need to document the presence and severity of any psychiatric conditions that might be contributing to the seizures. Common screening tools used in trials might include questionnaires that assess depression, anxiety, post-traumatic stress disorder, and quality of life.
Many clinical trials establish specific inclusion and exclusion criteria regarding other medical and psychiatric conditions. For example, some trials might exclude people who have both PNES and epilepsy, while others might include them but require separate documentation of both conditions. Trials might also exclude people with certain severe psychiatric conditions, active substance use disorders, or cognitive impairments that would make it difficult to participate in the study procedures or provide informed consent.
Functional and quality-of-life assessments are also standard in PNES clinical trials. Researchers want to know not just whether a treatment reduces seizure frequency, but also whether it improves participants' ability to function in daily life, work, maintain relationships, and experience overall well-being. Various standardized questionnaires and rating scales are used to measure these outcomes at the beginning of the trial and at regular intervals throughout.
Some clinical trials may require additional diagnostic procedures to rule out other conditions or to better understand the mechanisms of PNES. These might include neuropsychological testing to assess cognitive function, specialized brain imaging studies beyond routine MRI or CT scans, or laboratory tests to check for metabolic or hormonal imbalances that could contribute to symptoms. The specific requirements depend on the focus and design of each particular trial.
Safety monitoring is an important component of clinical trial diagnostics. Throughout the trial, participants undergo regular assessments to check for any adverse effects of the treatment being studied. This includes medical examinations, laboratory tests, and ongoing documentation of any new symptoms or changes in existing symptoms. Researchers must be able to detect and respond to any safety concerns quickly.
It is worth noting that access to clinical trials for PNES can be limited by the need for confirmed video EEG diagnosis. Many people with suspected PNES never undergo this testing due to lack of access to epilepsy monitoring units, insurance coverage issues, or other barriers. This means that some individuals who might benefit from participating in research cannot do so until they receive proper diagnostic confirmation through video EEG monitoring.
Prognosis and Survival Rate
Prognosis
The outlook for people with psychogenic nonepileptic seizures varies considerably from person to person. Many factors influence how the condition progresses and whether symptoms improve. Early and accurate diagnosis is one of the most important factors affecting prognosis—the sooner PNES is correctly identified and appropriate treatment begins, the better the chances for improvement.
Research shows that a significant proportion of people with PNES continue to experience seizures and impairments in quality of life and daily functioning even after diagnosis. Long-term outcome studies indicate that complete seizure freedom is not achieved by everyone, and many individuals continue to have episodes despite treatment. However, effective treatment, particularly cognitive behavioral therapy, can reduce seizure frequency by approximately 50 percent and lead to improvements in mood and overall quality of life.
Several factors can influence prognosis. People who accept their diagnosis and engage actively in psychological treatment tend to have better outcomes than those who remain skeptical or do not participate in therapy. The presence of severe psychiatric conditions, ongoing trauma or stress, chronic pain, or other medical conditions can make treatment more challenging and may result in slower improvement. Additionally, how long someone has had PNES before receiving the correct diagnosis matters—those who are misdiagnosed for many years and treated with multiple epilepsy medications may have more difficulty achieving improvement.
Access to appropriate care is also a critical factor. Many people face barriers to receiving the mental health treatment they need, including lack of insurance coverage, shortage of mental health providers who understand PNES, and difficulty accepting that psychological therapy is the appropriate treatment. These barriers can significantly impact long-term outcomes. Support from family members and healthcare providers who understand the condition also plays an important role in recovery.
It is important to understand that PNES should be viewed as a chronic condition that may require ongoing management rather than a problem that can be quickly fixed. Different phases of treatment may be needed over time, and symptoms may fluctuate in response to life stressors. However, with appropriate treatment and support, many people with PNES can achieve meaningful improvement in their symptoms and quality of life.
Survival rate
Psychogenic nonepileptic seizures are not life-threatening in themselves. Unlike epileptic seizures, PNES episodes do not cause brain damage and are not associated with sudden unexpected death in epilepsy (SUDEP), a rare but serious complication that can occur with epilepsy. The episodes themselves, even when they appear dramatic or severe, do not directly threaten survival.
However, the condition can indirectly affect health and safety. People with PNES may sustain injuries during episodes if they fall or encounter hazards in their environment, although serious injuries are less common than with epileptic seizures because people with PNES often retain some protective responses even during episodes. The psychological distress that underlies PNES can also contribute to other health problems, particularly when co-occurring conditions like depression or anxiety are severe.
The impact of PNES on quality of life and daily functioning can be substantial. Many people with PNES experience significant disability, difficulty maintaining employment, challenges in relationships, and limitations in activities. These functional impairments can persist even when seizure frequency decreases with treatment. Addressing these broader impacts on life quality is an important part of comprehensive care for PNES.
