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The authors take an in-depth look at the evaluation, diagnosis, and fundamental treatment recommendations, protocols, and guides to therapy for psychogenic nonepileptic seizures.
Psychogenic nonepileptic seizures (PNES) are episodes of altered movement, sensation, or reported experience that mimic epileptic seizures (ES) but are not the result of abnormal electrical discharges from the brain. Rather, they are presumed to be “caused” by emotional trauma, unresolved conflicts, or other psychological factors; hence the moniker “psychogenic.” But since there is no known mechanism whereby the mind or psyche can produce symptoms of this type, PNES are best appreciated as disorders of behavior.1 This formulation-as a disorder of behavior and not a disease in and of itself-has important implications for how we treat patients with PNES.
Epidemiology and risk factors
In clinical settings, PNES are relatively common. Up to 20% of outpatients with intractable seizures are found to have these behavioral episodes rather than epilepsy; this figure increases to 40% of patients admitted to specialized epilepsy in-patient units.2 In patients who have PNES, the condition typically remains undiagnosed, or incorrectly diagnosed, for 7 to 10 years before the correct diagnosis is made.3 This results in expensive, unnecessary, and sometimes harmful treatment and severely diminished quality of life.
As in many somatoform disorders, PNES is more prevalent in women than in men, and the onset is most often in young adulthood (ages 20 to 30).4 A common risk factor is a history of head trauma. As many as 75% of patients with PNES report having sustained a head injury, and about 20% attribute their seizures to brain injury after mild head trauma. Another risk factor is epilepsy. Approximately 10% of persons with PNES also have ES; this figure reaches 30% in patients with PNES who also have intellectual disability.5
Reports of physical, sexual, or emotional trauma are very common among patients who have PNES. About 70% report one or more severely traumatic events before their first PNES episode. In nearly half of these patients, the trauma is sexual.5 However, several studies find no difference in trauma history between persons with PNES and those with ES.6,7 In addition, the specificity of early-life abuse to the development of seizures later in life has never been established. A history of trauma might therefore best be viewed as a risk or vulnerability factor (like low intelligence and history of head injury) in the genesis of PNES.
Associated psychological disorders
The majority of patients with PNES have preexisting psychiatric disorders, most often major depression or an anxiety disorder.8 Patients typically receive diagnoses of somatoform disorder or dissociative disorder because they have medically unexplainable sensory, motor, and psychic events with alterations of consciousness.9 Many patients with PNES have life-long problems relating to others and receive personality disorders diagnoses. Patients with PNES often have DSM-IV-TR cluster A and B personality disorders, whereas those with ES are more likely to have cluster C personality disorders.10
Psychogenic Non-Epileptic Seizures: Clinical Issues for Psychiatrists
Health care providers often tell patients that their PNES are “caused by stress.” Testa and colleagues11 investigated whether these patients actually experience more stressful life events than other people. They found that patients with PNES do not sustain more frequent or more severe stressful life events than patients with epilepsy or healthy persons. However, patients with PNES reported more profound distress over negative life events, especially in the domains of work, social functioning, legal matters, and health. They were also less likely to engage in the problem-centered coping strategies of planning (eg, formulating intended actions) and active coping (eg, taking concrete steps to ameliorate the situation) than the other groups in the study.
Although patient in the PNES group did not engage in more denial than the other groups, its use as a coping mechanism was associated with greater perceived distress. These results suggest that teaching patients how to manage life stress-both major stressful events and everyday annoyances-may be an essential component of psychiatric care.
Evaluation and diagnosis
The gold standard for the diagnosis of seizures is video-electroencephalography (video-EEG), whereby behavioral events are observed and recorded with the simultaneous registration of the EEG. This is often accomplished in a specialized epilepsy monitoring center. The absence of epileptiform activity on the EEG before, during, or after a characteristic event suggests the diagnosis of PNES.5
Studies have attempted to determine whether specific semiological elements can help distinguish PNES from epilepsy. Specific movements more commonly associated with PNES than ES include side-to-side head and body movements, pelvic thrusting, and thrashing.4,5,12 PNES often have a fluctuating course and are much longer in duration than ES, which are usually briefer than 3 minutes.5,13 Vocalization often occurs at the end of a PNES event, whereas it occurs at the beginning (when it does occur) of an ES. Furthermore, the vocalization in PNES often has an affective content, and women often cry.10 Finally, memory for the episode is more often associated with PNES, whereas postictal confusion and amnesia characterize ES.5
Syed and colleagues14 developed a 209-item, self-report questionnaire that assesses clinical, seizure-related, and psychosocial characteristics for the detection of PNES. Through a variety of statistical techniques, 53 items were found to predict the diagnosis of PNES with 94% sensitivity and 83% specificity. When applied to a cross-validation sample, sensitivity and specificity remained high, at 85%. This instrument clearly shows promise for early identification of possible PNES and rapid referral for video-EEG assessment. Although specific to the fictional patient in the case vignette, the Table lists 2 instruments that can be used when evaluating a patient with possible PNES.
Psychological testing. Although formal neuropsychological assessment can help rule out frank brain impairment and, hence, support the diagnosis of PNES, it is perhaps most useful in providing insights into the patient’s personality structure, emotional symptoms, and strategies for dealing with adversity. Thus, the use of well-validated personality and psychopathology inventories, such as the NEO Personality Inventory–Revised, Minnesota Multiphasic Personality Inventory, and Personality Assessment Inventory (PAI), and symptom scales, such as the Symptom Checklist-90-Revised, and Beck Depression and Anxiety Scales, is encouraged.
Most recent studies find that psychological tests are only moderately successful in distinguishing patients with PNES from those with epilepsy. Using the PAI, Wagner and colleagues15 developed an “NES [nonepileptic seizure] Indicator” consisting of the difference between the Conversion and Health Concerns subscales of the Somatic complaint scale. It correctly classified 84% of their PNES sample and 73% of their ES sample. In an attempted replication with a much larger sample, Thompson and colleagues16 achieved 84% specificity for PNES, but near-chance sensitivity of 59%. Most recently, Testa and colleagues17 found that the Conversion subscale alone had 74% sensitivity and 67% specificity. More important, they argued that PAI profiles identify specific psychopathological factors that may be targets of intervention.
Although the literature is replete with treatment recommendations, protocols, and guides to therapy, there appear to be 4 fundamental elements to the treatment of persons with PNES. The first is relaying the diagnosis: tell patients the good news that they do not have a brain disease. However, acknowledge the reality of their episodes and reassure them that no one thinks they are “faking.” In a sizable minority of patients, this alone is sufficient to eliminate the episodes.18 Hall-Patch and colleagues19 developed and tested a patient information leaflet and a diagnosis communication strategy that are readily accepted by patients and highly effective in conveying the necessary information. After 3 months, 14% of their patients were event-free and another 63% had a greater than 50% reduction of episodes.
The second component of treatment is withdrawal of antiepileptic medications and discontinuation of further neurodiagnostic testing. Not only do antiepileptic medications have a host of negative side effects, but failure to taper them in a timely manner undermines an effectively delivered diagnosis.20
The third component is treatment of any psychiatric disorder that may underlie PNES. Judicious use of antidepressant and/or anxiolytic medications, coupled with psychotherapy, is usually indicated. LaFrance and colleagues21 conducted a 12-week randomized controlled trial of flexible-dose sertraline for PNES. A 45% reduction of episodes was found in the active-treatment group compared with an 8% increase in the placebo group. In a follow-up multisite trial of sertraline and psychotherapy informed by cognitive-behavioral therapy (CBT) principles, psychotherapy alone resulted in a 51% improvement, whereas sertraline alone resulted in a 27% reduction of seizures.22 Patients who received both sertraline and psycho-therapy had 59% fewer seizures as well as decreased depression and anxiety and improved quality of life and overall functioning.
The fourth component is treatment of the PNES behavior itself. Since some patients reject the formulation of their condition as “psychiatric,” they may resist psychotherapy. Hence, a distinctly “rehabilitative” approach that uses behavioral or cognitive-behavioral techniques may be most palatable.
Psychotherapy for PNES. A fundamental principle of psychotherapy for PNES is to avoid becoming mired in the morass of trauma. Focusing on actual or perceived abuse from others is rarely useful in restoring the patient to health. Instead, therapy should be forward-looking. The patient needs to understand that the “reasons” for the seizures may never be known, and he or she must come to appreciate that such knowledge is irrelevant to getting better. The patient essentially has the option of staying ill and potentially living the life of an invalid or of getting well and living a more fulfilling life. The choice is up to the patient; those who opt for the former are poor candidates for psychotherapy.
In a pilot study of CBT for PNES, Goldstein and colleagues23 compared CBT plus standard medical care with standard medical care alone. The CBT group had significantly greater event reduction than the control group, and these improvements were maintained at 3- and 6-month follow-up. Additional studies by Kuyk and associates24 and by LaFrance and colleagues25 also found CBT to be effective in reducing event frequency and/or psychiatric symptoms and in improving overall functioning and quality of life.
Manualized CBT may be better than placebo in group studies but, in most cases, short-term, rehabilitation-oriented psychotherapy that is tailored to the individual patient (informed by CBT principles) is the treatment of choice. The following case vignette illustrates the importance of knowing the patient, assessing her cognitive and emotional strengths and liabilities, and delivering time-limited treatment that focuses on restoring normal life function.
Mrs L, who is a 55 years old, presents with episodes of light-headedness, unresponsiveness, olfactory hallucinations, and occasional motor weakness that had been occurring for approximately 1 year, as well as more recent onset of stammering speech. Extensive neurological workups, including inpatient evaluations in 2 university epilepsy monitoring units, failed to reveal a cause of these symptoms, and PNES was ultimately diagnosed.
The patient experienced severely stressful life events, including abuse as a child and several recent deaths in her family. She is overweight, hypertensive, and prediabetic, but otherwise in reasonably good health. She denies any prior history of mental health problems or treatment, as well as any history of alcohol, tobacco, or illicit drug use.
Mrs L started to experience halting and stammering speech a few months before her first visit. This waxed and waned as she experienced anxiety or excitement. Her first seizure-like episode occurred about 2 weeks later. Several weeks later, she had an episode while driving. She was hospitalized for 2 days and underwent MRI and CT scans that revealed only mild, chronic small-vessel disease.
The patient reports being highly self-conscious, anxious, and prone to stress (Table). At the same time, she is interpersonally warm and frequently experiences joy and delight. Persons with similar personality profiles often experience both positive and negative emotions very strongly and may swing between them. Their relationships are often tumultuous because they are ruled by their feelings.
Mrs L describes herself as exceptionally kind, altruistic, generous, sympathetic, and modest. This is consistent with her history of dedicated church involvement and her fostering of needy children. However, her feelings are readily hurt, and she often feels victimized. Her kind, cooperative, and humble character does not allow her to express anger openly.
Mrs L’s clinical profile on the PAI shows modest elevations on depression, anxiety, and somatic concerns. She has mild and transient depressive symptoms, mostly in the cognitive and physiological (rather than mood) domains. She reports low energy, slowed movement, difficulty in falling asleep, occasional early awakening, and frequent disruptions in her sleep. She also reports decreased ability to concentrate and maintain attention, and difficulty in organizing her thoughts.
Overall, Mrs L’s core personality is affiliative, generous, modest, and unassuming. At the same time, she experiences stress quite directly (mostly in the form of worry and poor concentration) and is unable to express anger or dissatisfaction overtly. Because of her traditional lifestyle, somatic expressions of distress may be more acceptable to her than emotional ones.
Treatment is time-limited. Mrs L is assured that her condition is very treatable and that if she commits to getting well, she can expect substantial improvement within 6 to 8 months. During her first session, Mrs L talks a great deal about the physical, sexual, and emotional abuse she endured as a child. Her feelings of victimhood are still strong, and she sees them as causally linked to her symptoms. It is explained to her that patients with stress-related, or “psychogenic,” seizures often have histories of abuse, and that while it is indeed horrible, she has obviously not let it dominate her life.
Mrs L is instructed in the use of a seizure diary. At the first session, she reports having had 22 PNES in the past 10 days. No obvious precipitants or contexts are discerned. When she experienced an episode of head pressure, headache, weakness, or speech difficulty, she is encouraged not to “fuss” over it. She is instructed to “work through” the event-ie, to take a few deep breaths, pause, and then resume her activities. She also discovers that the simple “sensorimotor trick” of rhythmically touching her right index finger to her thumb often helps abort an event.
Mrs L’s treatment sessions are scheduled at least 4 weeks apart. Although she requests more frequent visits, she is told that for the treatment to be effective, she needs sufficient time to experience the events and practice her coping strategies. This spacing of visits also helps her avoid becoming more somatically focused and dependent on therapy.
At each treatment session, ways of managing minor interpersonal conflicts and challenges are discussed, and assertive problem-solving strategies are rehearsed. Mrs L’s overall health and well-being are also a focus of the sessions. With encouragement, she begins to exercise several times a week and to eat healthier foods. Over time, Mrs L raises the topic of abuse less often. When she does, it is acknowledged empathically and the conversation returned to current-day events and relationships.
At her sixth treatment session, Mrs L notes that she had no incidents of PNES during the past month. She has lost 20 lb since her first visit, and she feels wonderful. A follow-up e-mail 7 weeks later reveals that Mrs L remains event-free. She is happy and feels entirely well.
Mrs L may not be a “typical” patient with PNES. She is highly educated, has no severe psychopathology, and is very motivated to get well. Nonetheless, her case illustrates how a time-limited, personally tailored psychotherapy that considers the patient’s unique characteristics and helps shift her focus to health-affirming behaviors can be effective in treating PNES and restoring normal function.
Dr Brandt is Professor of Psychiatry & Behavioral Sciences and Neurology at The Johns Hopkins University School of Medicine in Baltimore. Dr Puente is a clinical and research fellow in neuropsychology at The Johns Hopkins University School of Medicine. They report no conflicts of interest concerning the subject matter of this article.
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