What is Psychogenic Nonepileptic Seizures?
Psychogenic nonepileptic seizures (PNES) are common events that are often mistaken for epilepsy. This misunderstanding can lead to unnecessary medical treatments and procedures, and at the same time, patients might not receive the psychological care they need. Even though PNES might look like epilepsy, they are usually caused by psychological factors. However, a combination of genetic, environmental factors, personality traits, and childhood experiences are being studied as possible causes. Rarely are these events intentional, unless in the case of certain mental health disorders, but by definition, PNES are not deliberate acts.
“Pseudoseizure” is an outdated term for these events, which aren’t actually caused by the abnormal brain activity seen in epileptic seizures. The term is misleading as it suggests that the patient is “faking” the symptoms, when in reality, these are unconscious responses to emotional triggers or stress. Other outdated terms like “hysterical seizures”, “functional seizures”, and “stress seizures” should also be avoided.
Telling the difference between PNES and epileptic seizures can be challenging, even for experienced doctors. In fact, PNES is said to fall between the specialties of neurology and psychiatry. Delays in diagnosing PNES are common. The best way to diagnose PNES is through video electroencephalography (video-EEG), a test that monitors the brain’s electrical activity, which shows no abnormal brain activity during a PNES event. In fact, 20% to 40% of patients referred to epilepsy monitoring units for difficult-to-control seizures are discovered to have PNES.
Correct diagnosis is critical for treating PNES successfully. Yet, misdiagnosis is common, especially among general practitioners and emergency doctors. A thorough medical history and examination are crucial to getting the right diagnosis. Consulting with a neurologist and conducting a video-EEG analysis are often necessary. In difficult cases, referring to a specialized epilepsy center could be beneficial.
Informing the patient about a PNES diagnosis must be done carefully and empathetically, as it can be quite upsetting and even exacerbate PNES symptoms. This is especially delicate if the patient was previously diagnosed with epilepsy or has a history of trauma or abuse. It is very important for the doctor to assure their patients that help is available, that their symptoms are real, and that these symptoms are a source of distress for the patient and those around them.
Treatment of PNES can be complex; using medications meant for epilepsy is not beneficial and can even be harmful. These should be stopped unless they are being used for epilepsy, chronic pain, or mood disorders; continuing medication after a PNES diagnosis can lead to poor outcomes. Psychotherapy can be effective in reducing seizure frequency, improving psychological functioning, and enhancing overall quality of life.
What Causes Psychogenic Nonepileptic Seizures?
Psychogenic non-epileptic seizures (PNES) traditionally are thought to relate to underlying emotional distress or unresolved feelings. Due to their varied presentation, understanding the causes of PNES can be different for different people. However, some psychological models suggest that the seizures might be a complex combination of various cognitive factors.
Certain situations such as trauma or acute stress may increase the risk of PNES. Some concurrent disorders might also increase the risk, like functional or dissociative disorders, PTSD, mood and personality disorders, ongoing epilepsy, mild head injuries, cognitive or sleep problems, migraines, pain disorders, and even asthma.
Previously, the common explanation for PNES was a conversion disorder, which means that a person isn’t really conscious of their stress and isn’t purposefully faking the events. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) categorizes PNES as a conversion disorder. However, newer theories suggest that PNES might be caused by a complex network of biological, psychological, and social elements. The International Classification of Diseases (ICD-11) categorizes PNES as a dissociative disorder, and The International League Against Epilepsy (ILAE) considers PNES as one of the top ten neuropsychiatric conditions related to epilepsy.
Diagnosing PNES should not be made just based on a single symptom or even a combination of multiple symptoms. It’s not completely understood how these various risk factors result in PNES. Various psychological stressors such as parental conflicts and divorce in children, ongoing physical and sexual abuse, grief, and job or financial loss have been reported as the events initiating PNES.
PNES can also be due to physical causes which can be neurological (like migraines, stroke etc.) or non-neurological (like disturbances in body’s metabolism, heart arrhythmias etc.)
Risk Factors and Frequency for Psychogenic Nonepileptic Seizures
PNES, or psychogenic non-epileptic seizures, are more common than you might think in the United States. Recent studies have shown that out of every 100,000 people, about 3.1 get PNES annually, and around 108.5 people out of 100,000 have it. In clinics specializing in epilepsy, 5 to 10% of patients are actually found to have PNES instead of epilepsy, and this figure goes up to 20 to 40% for inpatients in epilepsy monitoring units. In one particular study, 10% of patients who were thought to have a severe type of seizure that didn’t respond to commonly used medicine ended up being diagnosed with PNES instead.
There are several factors that can increase your risk of developing PNES. These include:
- Being female
- Having psychiatric issues, like depression, anxiety, or post-traumatic stress disorder
- Experiencing sexual abuse during childhood
- Going through trauma or a brain injury
- Having surgical procedures
- Having learning disabilities
Signs and Symptoms of Psychogenic Nonepileptic Seizures
Identifying the difference between psychogenic nonepileptic seizures (PNES) and epileptic seizures can be a challenge, just by relying on medical history and observation. However, it is vital to pinpoint the correct diagnosis early because people with PNES often face a delay in getting the right treatment. Some key features can help to distinguish between both types of seizures.
- Age of onset: Both can occur at any age, but PNES is most common between ages of 15 and 20, whereas epileptic seizures are most common in children, in the twenties, and after age 50.
- Sex: PNES is more common in females (3:1), but there is no apparent difference in epileptic seizures according to sex.
- Aura (a sensation that precedes a seizure): Less frequent in PNES but more frequent in epileptic seizures.
- Duration of seizure: PNES often lasts more than 10 minutes, whereas epileptic seizures typically last 1-2 minutes.
- Physical symptoms during the seizure can vary greatly between PNES and epileptic seizures.
- Subjective symptoms: Less common in PNES, more common in epileptic seizures.
- Urinary incontinence during the seizure: Less common in PNES, more common in epileptic seizures.
- Injury during the seizure, like biting the tongue: Less common in PNES, more common in epileptic seizures.
- Onset during the night: Less common in PNES, more common in epileptic seizures.
However, it’s crucial to note that these features are not definitive. For example, PNES can also be triggered by light, emotional stress, headaches, muscle soreness, and sensory symptoms, similar to epileptic seizures. Therefore, it is important to consult a medical professional for an accurate diagnosis.
Testing for Psychogenic Nonepileptic Seizures
Generalized convulsive seizures usually start suddenly with stiff body postures followed by synchronized limb movements, loss of consciousness, and confusion afterward. However, there can be exceptions, particularly when the seizures start in the frontal or temporal areas known as focal impaired awareness seizures (formerly complex partial seizures). These may result in unusual body movements, confusion, and minor repetitive movements. Recording seizures with video can be useful for later analysis, assuming patient consent and hospital policies permit this.
Some methods, such as using ammonia capsules or causing physical discomfort, sometimes used to ‘wake up’ a patient thought to be feigning unconsciousness or experiencing psychological rather than physical seizure-like symptoms, should be avoided.
A correct diagnosis is very important for the successful treatment of psychological non-epileptic seizures (PNES), which are seizures caused by psychological factors and not by abnormal electrical activity in the brain. These patients often get wrongly diagnosed as having epilepsy and may be prescribed many different seizure medications. In most situations, it’s recommended to have a neurologist (doctor specializing in disorders of the nervous system) involved in your diagnosis.
Confirming a diagnosis of PNES typically involves detailed patient history, video recording of a typical seizure episode, and a video electroencephalogram (EEG), which records electrical activity in the brain. In cases where a patient appears unconscious, seeing an alpha rhythm on EEG indicates that the patient is actually alert. The lack of epileptic-like activity on the EEG suggests that the seizure is not epileptic in nature. However, all types of epileptic seizures may not be detectable via scalp electrodes used in EEG.
Lab tests don’t usually provide much help in diagnosing PNES. While it’s known that levels of the hormone prolactin can rise after a physical seizure but not after PNES, this isn’t particularly useful in practice. Other factors, like medication and physical activity, can affect prolactin levels. Similarly, lactic acid levels often increase after a physical seizure but aren’t specific to epileptic seizures; they can also rise due to vigorous physical activity. Other blood tests are not commonly used but can provide some limited information.
Brain imaging is standard practice when evaluating an initial seizure, regardless of its cause. Although, it’s essential to remember that there’s no telltale sign in the images that can separate PNES from epileptic seizures.
Neuropsychological testing (evaluating mental functions related to the brain) can provide helpful additional information but shouldn’t be the sole basis for diagnosing PNES. Once a detailed patient history and video-EEG has been taken, neuropsychological testing can help guide additional testing. It’s most useful in creating a treatment plan according to the patient’s personality structure and cognitive strengths and weaknesses.
Treatment Options for Psychogenic Nonepileptic Seizures
In treating psychogenic non-epileptic seizures (PNES), that is, seizures that occur due to psychological causes as opposed to physical causes, the doctor conveys the diagnosis to the patient in a compassionate and understanding way. It’s important to communicate to the patient that these are real incidents and not just imagined or fake. Also, the patient should know that there are effective treatments available. While the healthcare professional may use terms like “seizure” or “event” to describe these incidents, it’s essential for the patient to know that anti-seizure medicines, commonly used to treat epilepsy, are not useful in this case.
If the patient is determined to have PNES without any accompanying epilepsy, these anti-seizure medicines should be stopped. The doctor should make it clear that by using therapies focused on support and understanding, the frequency of these events can very likely be reduced, or possibly even eliminated.
The best forms of treatment for PNES are not definitive and will depend on the individual. Specific mental health conditions that frequently occur alongside PNES, such as Post Traumatic Stress Disorder (PTSD) and mood disorders, also require treatment.
Upon revealing the diagnosis to the patient, treatment focusing on emotional support should be started right away. Some patients may find it hard to accept this diagnosis and may seek other opinions. Regular check-ups with the healthcare provider can be very beneficial for the patient’s long-term care. The neurologist who makes the diagnosis should continue to be involved in the patient’s care to avoid feelings of being abandoned, which can negatively impact the patient’s willingness to engage in their treatment.
According to experts, cognitive behavioral therapy (CBT), which is a type of therapy that helps patients understand and change their thought patterns that lead to harmful actions or expressions, is the most effective treatment for PNES. One comprehensive study found that CBT alone reduced the rate of these events by more than 50%, and when combined with an antidepressant called sertraline, the reduction reached nearly 60%. The study also reported significant improvements in the patients’ overall quality of life, mood, and daily functioning.
What else can Psychogenic Nonepileptic Seizures be?
Psychogenic non-epileptic seizures (PNES) are identified once other causes of similar symptoms are ruled out. There are many conditions that can appear as seizures or PNES, making this a challenging diagnosis, even for experienced doctors. Conditions that may have symptoms similar to PNES include:
- Convulsive syncope (fainting)
- Sleep disorders, particularly parasomnias and enraptured sleep
- Functional movement disorders
- Factitious disorder (when a person acts as if sick)
- Malingering (faking symptoms for some type of gain)
That’s why it’s so pivotal to have a thorough diagnostic approach to rightfully identify PNES.
What to expect with Psychogenic Nonepileptic Seizures
The future health outcomes for patients with Psychogenic Non-Epileptic Seizures (PNES) can be hard to predict. If these seizures are correctly identified and diagnosed, treating any associated mental health conditions accompanied with psychological therapy may result in fewer seizure episodes. Cognitive-Behavioral Therapy, a type of psychological therapy that helps individuals manage their problems by changing the way they think and behave, appears to be beneficial in these cases.
It is also believed that patients who accept their PNES diagnosis can experience improved results. Nonetheless, despite proper diagnosis and management, patients with PNES face a mortality rate that’s over twice as high as that of the general population. This rate is similar to that found in patients with drug-resistant epilepsy. Tragically, up to 20% of deaths in those with PNES are due to suicide.
Additionally, PNES is associated with a lower quality of life, high unemployment rates, and disability.
Possible Complications When Diagnosed with Psychogenic Nonepileptic Seizures
Incorrectly treating generalized status epilepticus, a type of severe seizure, can lead to various problems. These mainly include side effects to medications. When psychogenic nonepileptic seizures (PNES) are mistakenly diagnosed as convulsive status epilepticus, patients might be given high amounts of antiseizure medications. This could lead to undesirable situations like loss of consciousness or even breathing problems. Unnecessary use of a breathing tube, known as endotracheal intubation, can also happen, and this comes with its own set of risks.
List of Potential Complications:
- Adverse reactions to medications
- Impaired consciousness
- Respiratory failure
- Unnecessary endotracheal intubations
- Iatrogenic complications (problems resulting from medical treatment)
Preventing Psychogenic Nonepileptic Seizures
As we have talked about before, it’s vital to accurately determine if Psychogenic Nonepileptic Seizures (PNES) are present to provide the right treatment. Explaining to the patient and their family that these seizures stem from mental health issues, and reducing the use of seizure medications, can help decrease the number of episodes. The patient should be advised about the importance of going to follow-up appointments with their brain and mental health doctors. This will improve the chances of reducing the amount of seizures and enhancing their general well-being.