INTRODUCTION — Psychogenic nonepileptic seizures (PNES) are nonepileptic events resembling seizures or syncopal attacks. The management and prognosis of PNES are discussed in this review. The etiology, epidemiology, clinical manifestations, and diagnosis of PNES are reviewed separately. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis".)
Other nonepileptic paroxysmal disorders are discussed elsewhere. (See "Nonepileptic paroxysmal disorders in adolescents and adults".)
CLINICAL MANIFESTATIONS AND DIAGNOSIS — The etiology, epidemiology, clinical manifestations, and diagnosis of PNES are reviewed here briefly and discussed in detail separately. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis".)
●PNES are events thought to have mainly psychologic origins. They clinically mimic epileptic seizures or syncope but are not associated with abnormal neuronal activity, epileptiform activity on EEG, or reduced perfusion to the brain. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis", section on 'Etiology'.)
●PNES include a variety of clinical manifestations, some of which are suggestive, although not independently diagnostic, in distinguishing PNES from other differential diagnoses (table 1A-B). (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis", section on 'Clinical manifestations'.)
●The diagnosis of PNES is generally established by video-electroencephalography (EEG) monitoring, in which captured clinical events are examined in conjunction with EEG activity. Other tests (interictal EEG, neuroimaging, and laboratory studies) are used primarily to investigate alternative etiologies and are not diagnostic of PNES. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis", section on 'Diagnostic evaluation'.)
EXPLAINING THE DIAGNOSIS
Challenges — Presenting the diagnosis of PNES to patients can be challenging and should not be done until the diagnostic evidence is as good as it can be [1,2]. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis", section on 'Diagnostic evaluation'.)
Published strategies for communicating the diagnosis of PNES to patients [3-7] have elements in common. Adverse responses do occur, including anger (which may be prognostically bad) [8,9] and exacerbation of events [8,10]. What the content of the conversation is will depend on what tests have been carried out, what interventions are proposed, and other factors.
Our approach — The following scheme approximately summarizes the author's practice. Note that while causes are mentioned in a general way, no questions regarding causes specific to the patient are asked at this early stage.
●Go through the description of the events with the patient and caregiver and confirm that the recorded events are the same as the habitual events.
●Explain how electroencephalography (EEG) works and how the recording of events has led to the diagnosis.
●Explain that the events are related to emotional or psychological issues, or to past or present factors in the patient's life, but are not due to a medical condition, specifically not epilepsy.
●Volunteer potential causes, being clear that "specimen" causes (ie, examples) are being discussed.
●Volunteer that this type of event is seen commonly and happens to ordinary people.
●Volunteer that you understand that the events are not under conscious control, but that patients can learn to control them.
●Volunteer that while patients may have high levels of anxiety or have low mood, the events are not associated with psychiatric illness, and that you do not consider that the patient is "crazy."
●Explain that the events are not amenable to drug treatment, but that psychological intervention is used. Describe what psychological intervention is likely to consist of.
Therapeutic implications — One striking characteristic of PNES as a disorder is that a significant minority of patients, varying from 17 to 40 percent [1,5,10-17], stop having events on delivery of the diagnosis. The evidence for this is observational, though examination of the timing of cessation of events suggests that the delivery of the diagnosis is causal [18]. There is also convincing evidence that some aspects of health care utilization improve (ie, demand for health services is reduced) at the same time [19-21], even in some patients in whom the PNES do not [10]. This includes emergency health care. We have no good information on what aspects of the diagnosis conversation are likely to be the most therapeutic. In this regard, it is striking that the study with the lowest remission rate [5] also found that their information was rated by patients as highly acceptable and understandable.
FOLLOW-UP — Neurologic follow-up is required for all patients with both PNES and epileptic seizures. It is also required for patients with a diagnosis of "PNES only" to monitor the safe withdrawal of antiseizure medications, answer patient questions, and reinvestigate if new events appear.
Coordination among caregivers — Maintenance of communication among neurologic, psychiatric, and primary care providers is required for optimal care of patients with PNES. This communication minimizes the potential for mixed and conflicting messages from different clinicians to contribute to poor outcome [8].
The neurologist can be regarded as the "guardian" of the diagnosis of PNES. Patients who have been given a diagnosis of PNES may express a lack of understanding of the diagnosis, despite a thorough diagnostic discussion that the patient reported to have understood at the time [8,22]. Patients may also report new and different events or may describe new symptoms to the psychologist or psychiatrist that cause diagnostic concern. In these circumstances, it is advised that the psychologist or psychiatrist suspend treatment (which will not, in any event, make progress while there is diagnostic doubt in the mind of the patient, relatives, or the clinician) and promptly send the patient back to the neurologist for further explanation or evaluation. Criteria for this step should be agree beforehand as part of a management plan. Some experts advise that patients with PNES only (no epilepsy) should not be discharged from the neurologist's care until the patient, family, and caregivers accept the fact that the patient does not have epilepsy; neurologic care can then be discontinued once patient has safely withdrawn from antiseizure medication and has fully transitioned to psychiatric care [2,23]. However, offering follow-up to patients who are completely unwilling to accept the diagnosis is counterproductive, in our experience, as it undermines the "no epilepsy" part of the diagnostic message. It is also our experience that when patients do not accept the diagnosis, they are often unwilling to attend follow-up in any event.
Withdrawal of antiseizure medication — For patients on antiseizure medication who have a diagnosis of PNES only (ie, no epilepsy), antiseizure medication should be gradually withdrawn [4]. The perceived risk of uncovering an unrecognized controlled epilepsy will vary from patient to patient. One study found that in patients with the following characteristics, the risk of an emerging epilepsy on withdrawal was low [24]:
●All current types of event described by patient and eyewitnesses recorded and identified as PNES
●No descriptions of past events raising suspicion of epilepsy rather than PNES
●No history of events during childhood
●No interictal epileptiform abnormalities on electroencephalography (EEG)
The highest risk for seizure relapse in patients was within the initial several months after discontinuation of antiseizure medication therapy [24]. Therefore, supervision of withdrawal should be close during this period, and patients should be advised to report any events different from the recent (diagnosed as PNES) events. Any such events may have to be recorded on video EEG.
There is a tendency for physicians who diagnose patients with PNES only to leave them on antiseizure medications "just in case" of an underlying epilepsy. However, leaving a patient on antiseizure medications tends to undermine a "PNES only" diagnostic message and makes therapy difficult. Early withdrawal of antiseizure medications may be associated with some benefits, including decreased use of rescue antiseizure medication treatment, less emergency health care utilization, and higher employment rates at 18 months [25].
Neuropsychological testing and psychiatric evaluation — Psychometric testing can be helpful in identifying or defining cognitive deficits (eg, low intelligence quotient, poor executive function) that might guide or impact the success of interventions. A broader neuropsychological assessment can also identify comorbidities requiring treatment in themselves, such as anxiety and depression, and can identify potential causal factors and targets for intervention [26]. Psychiatric evaluation can elicit clinical features that may establish a diagnosis of depression, anxiety, somatic symptom disorder, a dissociative disorder, and other disorders [4,27-30]. Psychological or psychiatric evaluation may establish rapport that allows disclosure of traumatic events, which may be targets for intervention. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis", section on 'Psychopathology'.).
What is done in practice often reflects local availability of services and the willingness of patients to be referred. We offer psychiatric referral and would refer for psychometric testing if a relevant cognitive deficit is suspected.
INTERVENTIONS
Psychotherapy — Although some patients stop having events on being given the diagnosis of PNES (see 'Therapeutic implications' above), many continue to do so and require treatment. Psychotherapies are the mainstay of treatment, delivered by a psychologist or psychiatrist.
●Cognitive behavioral therapy – Cognitive behavioral therapy (CBT) is a widely used brief psychosocial intervention that is composed of a variety of therapeutic approaches. Observational case series and small randomized trials suggested that CBT might be helpful in reducing seizures and improving psychosocial functioning [31-35]. However, a reasonably large randomized trial of 368 patients found that a PNES-specific CBT approach was not effective in reducing event frequency or severity [36]. Some secondary outcomes, such as quality of life, psychosocial functioning, and others were significantly better in the treatment arm, suggesting that CBT may nonetheless have some non-seizure-specific benefits.
●Mindfulness-based therapy – Mindfulness-based therapy (MBT) may be beneficial for patients who have PNES, but data are sparse. Basic elements of mindfulness meditation include self-regulation of attention and taking a nonjudgmental stance towards one's experience. One observational study enrolled 49 patients with PNES in a 12-session MBT program [37]. At study conclusion, the 12-session program was completed by 26 patients; in this group, a 50 percent or greater reduction in PNES frequency was self-reported by 70 percent, and remission of PNES was reported by 50 percent. The high drop-out rate limits the strength of these findings. (See "Complementary and alternative treatments for anxiety symptoms and disorders: Physical, cognitive, and spiritual interventions", section on 'Mindfulness meditation'.)
●Traditional psychotherapy – Traditional psychotherapy has been used in patients with PNES with mixed success [16,38,39]. Group therapy sessions also employ traditional psychodynamic or psychoeducational techniques, and small observational studies have reported decreased episode frequency and/or improvement in psychosocial comorbidities in some patients with PNES [40-44]. The high prevalence of family problems in patients with PNES suggests that family-related interventions may be useful, but these have not been systematically studied [45].
●Psychodynamic interpersonal therapy – Psychodynamic interpersonal therapy is an alternative form of psychotherapy. In a case series of 47 patients with PNES, this intervention was associated with seizure remission in 25 percent and a >50 percent seizure reduction in 40 percent [46].
Response to psychiatric or psychological interventions is variable [4,47]. Interventions are often individualized according to the underlying psychiatric diagnosis (or psychological formulation). We have used a "toolbox" approach, whereby initial triage identifies issues that are thought to be causative, and a therapy type or types is chosen accordingly. As an example, when social factors predominate in causing or maintaining PNES, then family therapy, interpersonal therapy, or social interventions may be used, whereas where reaction to past trauma is prominent, mindfulness, counseling, and acceptance and commitment therapy might be used [26]. Whatever approach is taken, treatment recommendations are mostly based upon clinical experience and the results of observational studies; there have been few randomized treatment trials for PNES [33].
The evaluation of talking therapies (ie, psychotherapies) in PNES is challenging. Patients tend not to agree to take part in trials and may comply poorly with trial protocols. Trial design can also be challenging: the choice of control intervention can be difficult, and the opportunity for blinding is limited. The psychiatric conditions associated with or underlying PNES are variable [1], and the relevance of subgroup issues to treatment choice is not well understood. All these factors limit the quantity and quality of evidence available for evaluation of therapies.
Barriers to effective treatment of PNES patients also include unwillingness to accept a psychological diagnosis or attend therapy, poor compliance, financial and insurance-related limitations, and difficulty finding psychiatric and psychological clinicians who are experienced and comfortable with PNES.
Role of pharmacotherapy — We do not treat PNES using pharmacotherapy. Antidepressants and anxiolytics may be prescribed on an individualized basis but have had mixed results in open-label studies of PNES [40,48,49]. In a pilot study, 38 patients with PNES were randomly assigned to treatment with flexible-dose sertraline or placebo [50]. Active treatment was associated with a nonsignificant reduction in PNES frequency. Another pilot study found no benefit of sertraline except when combined with CBT [33].
DRIVING SAFETY — There are few data regarding driving safety in patients with PNES, and the little available evidence has not demonstrated that patients with PNES are at increased risk of motor vehicle crashes [2,51-54].
However, patients often report that their events are sudden and unpredictable, and in some territories (including New Zealand), this mandates a stand down from driving independent of diagnosis. We advise three months free of events before driving can resume. Guidance that follows a more individualized model has been published in the form of an International League Against Epilepsy Task Force report [55]. Clearly, the foregoing applies when the diagnosis of PNES is confirmed and there is confidence that there is not a comorbid epilepsy.
PROGNOSIS — The prognosis for patients with PNES is guarded. Many patients will continue to have PNES after diagnosis and treatment. Even patients whose PNES cease may have substantial psychiatric morbidity and functional limitations long term.
●Seizure freedom – Most studies that have assessed the prognosis in patients after PNES diagnosis suggest that only a minority (25 to 38 percent) of patients achieve seizure freedom [8,10,14,27,56,57]. Early studies were small and suggested a better prognosis for PNES in children [58,59]. This was supported by one larger study, which reported that 66 percent of 90 children were in remission at two years [60]. However, a later report of 63 children referred to a PNES clinic found that the rate of seizure remission at one year was only 32 percent [61].
●Psychiatric and psychosocial status – While outcome is often reported as a percent of those with seizure remission, this narrow measure does not necessarily reflect the overall clinical outcome with respect to psychiatric and psychosocial status [27,31,56,62]. As an example, in one study, 56 percent of patients overall continued to depend on state-supported financial benefits at four years after PNES diagnosis [27,56]. The percentage was lower, but still substantial (43 percent), among those in episode remission. Other studies have also found that occupational status, while more likely to improve if PNES cease, often does not improve, even when episodes remit [63,64]. Some studies suggest that psychosocial issues and depression, rather than persistent PNES, are more directly related to disability and reduced quality of life [31,65].
●Risk of suicide – Both attempted and successful suicides have been reported in some series with follow-up [31,63,66]. In one of these cohorts, suicide attempts were equally frequent (11 of 56 patients overall) in those with or without seizure remission [63].
●Mortality – Several studies suggest that there may be a modest increase in premature mortality in patients with PNES [67-69].
●Development of new complaints – Some patients may develop new somatic complaints after remission of PNES, especially headaches [70]. Other studies suggest that development of new somatic complaints is uncommon and similarly frequent in those with persistent PNES versus PNES in remission [14,71].
●Predictors of outcome – Many cohort studies have examined potential predictors of outcome, generally focusing on seizure outcome. The results of this exercise have been quite variable and may be affected by the compositions of cohorts, the datasets, methods of analysis, and other factors. Some factors inconsistently associated with a worse prognosis include [3,10,12,14,23,27,38,57,63,72-75]:
•Longer duration of symptoms
•Older age at onset
•Lower educational level, lower intelligence quotient
•More isolation, more limited family support
•Dependent lifestyle
•No formal treatment plan
•Unrelieved stressors (eg, ongoing abuse, family conflict)
•Anger, rejection of PNES diagnosis
•More severe underlying psychiatric disorder, especially severe or generalized somatization or dissociative symptoms
There is no consistent association between clinical semiology (which may in any event change with time) [12,76] and prognosis [75,77].
SUMMARY AND RECOMMENDATIONS
●Psychogenic nonepileptic seizures (PNES) are events thought to have mainly psychologic origins. PNES include a variety of clinical manifestations, some of which are suggestive, although not independently diagnostic, in distinguishing PNES from other differential diagnoses (table 1A-B). The diagnosis of PNES is generally established by video-electroencephalography (EEG) monitoring. The clinical features and diagnosis of PNES are reviewed in detail separately. (See "Psychogenic nonepileptic seizures: Etiology, clinical features, and diagnosis".)
●The diagnosis of PNES, once established, should be presented to patients and their families in a supportive, nonjudgmental fashion. (See 'Explaining the diagnosis' above.)
●In patients with a diagnosis of PNES only (ie, no epilepsy), antiseizure medications should be gradually withdrawn, with appropriate supervision. (See 'Withdrawal of antiseizure medication' above.)
●Neurologic follow-up should be maintained after a diagnosis of PNES to monitor the safe withdrawal of antiseizure medications, answer patient questions, reinvestigate if new events appear. (See 'Follow-up' above.)
●There is little evidence for any treatment for PNES. Psychological intervention is mainly used, including CBT approaches. However, evidence from a randomized trial found no benefit of CBT. (See 'Psychotherapy' above.)
●Pharmacotherapy is not effective for PNES but should be used as indicated to treat psychiatric comorbidity. (See 'Role of pharmacotherapy' above.)
●The prognosis for patients with PNES is guarded. Many patients will continue to have PNES after diagnosis and treatment. Even patients whose PNES cease may have substantial psychiatric morbidity and long-term functional limitations. (See 'Prognosis' above.)
ACKNOWLEDGMENTS — The UpToDate editorial staff acknowledges David K Chen, MD, who contributed to earlier versions of this topic review.
The editorial staff at UpToDate would also like to acknowledge Alan Ettinger, MD, MBA, who contributed to an earlier version of this topic review.
