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Psychogenic nonepileptic seizures: Management and


prognosis
Author: Roderick Duncan, MD, PhD, FRCP
Section Editor: Paul Garcia, MD
Deputy Editor: John F Dashe, MD, PhD

All topics are updated as new evidence becomes available and our peer review process is complete.

Literature review current through: Jan 2022. | This topic last updated: Dec 08, 2021.

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 – Two studies suggest that there may be a modest increase in premature
mortality in patients with PNES [67,68].

● Development of new complaints – Some patients may develop new somatic


complaints after remission of PNES, especially headaches [69]. Other studies suggest
that development of new somatic complaints is uncommon and similarly frequent in
those with persistent PNES versus PNES in remission [14,70].

● 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 [3,10,12,14,23,27,38,57,63,71-74]:

• 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) [12,75] and prognosis [74,76].

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

We are saddened by the death of David K Chen, MD, who passed away in March 2020.
UpToDate wishes to acknowledge Dr. Chen's past work as an author for this topic.

The editorial staff at UpToDate would also like to acknowledge Alan Ettinger, MD, MBA, who
contributed to an earlier version of this topic review.

Use of UpToDate is subject to the Terms of Use.

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Topic 131655 Version 3.0
GRAPHICS

Main clinical features of tonic-clonic seizures compared with the convulsive


type of psychogenic nonepileptic seizures (PNES)

Generalized tonic-clonic
  Convulsive PNES
epileptic seizures

Frequency Variable Infrequent PNES are unusual

Duration Usually <2 min excluding Brief PNES are unusual


postictal phase

Eyes Open/half open Usually closed

Motor activity Generalized tonus followed by Alternating movement or


generalized clonic activity tremor, occasionally thrashing,
back arching, side-side head
movement; tonic features
uncommon

Vocalization Initial, inarticulate, no emotional During and after seizure,


features conveys distress

Autonomic signs Signs of arousal and Cyanosis


hyperventilation, flushed, pale

Postictal phase Drowsy, confused, sleeps, Often back to alertness quickly;


severe headache distress

Incontinence of urine Reported and observed Commonly reported

Sleep events Commonly reported/observed, Commonly reported/observed,


events may occur only during but not EEG verified; events
sleep reported to occur during sleep
only highly unusual

Injury Commonly reported/observed Less commonly


reported/observed

Burns Thermal Friction

Tongue/mouth injury Bite to lateral tongue or inside Reported bite to tip of tongue
of cheek, observed injury

Stereotypy Usual Common

Not all features distinguish between tonic-clonic seizures and the convulsive type of PNES; no single
feature is sufficiently sensitive or specific to be used alone.

EEG: electroencephalogram.

Courtesy of Roderick Duncan, MD, PhD, FRCP.


Graphic 131637 Version 1.0
Main clinical features of syncope versus the "swoon" type of psychogenic
nonepileptic seizures (PNES)

Clinical feature  Syncope Swoon PNES

Frequency Infrequent Frequent

Duration Short, wakes rapidly after fall Often prolonged (many


minutes)

Trigger Usual Not usual

Aura Dizziness, elemental bilateral Usually none


visual, elemental auditory

Motor activity None, sparse jerks, brief tonus None

Postictal phase Rapid recovery Rapid recovery

Incontinence of urine Occasional Often reported

Sleep events No No

Injury Occasional May be reported

Burns Unusual No

Tongue/mouth injury Bite to tip of tongue reported Bite to tip of tongue reported

Stereotypy Yes Yes

Not all features distinguish between syncope and swoon PNES; no single feature is sufficiently
sensitive or specific to be used alone.

Courtesy of Roderick Duncan, MD, PhD, FRCP.

Graphic 131638 Version 1.0


Contributor Disclosures
Roderick Duncan, MD, PhD, FRCP No relevant financial relationship(s) with ineligible companies to
disclose. Paul Garcia, MD Equity Ownership/Stock Options: EnlitenAI Inc [Epilepsy].
Consultant/Advisory Boards: Biogen [Epilepsy]; Otsuka [Epilepsy]; Moon Creative Lab [Epilepsy];
EnlitenAI Inc [Epilepsy]. All of the relevant financial relationships listed have been mitigated. John F
Dashe, MD, PhD No relevant financial relationship(s) with ineligible companies to disclose.

Contributor disclosures are reviewed for conflicts of interest by the editorial group. When found, these
are addressed by vetting through a multi-level review process, and through requirements for
references to be provided to support the content. Appropriately referenced content is required of all
authors and must conform to UpToDate standards of evidence.

Conflict of interest policy

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