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Literature review current through: Jan 2022. | This topic last updated: Dec 08, 2021.
INTRODUCTION
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'.)
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.
● 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.
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.
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.
● 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].
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.
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.
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].
● 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].
There is no consistent association between clinical semiology (which may in any event
change with time) [12,75] and prognosis [74,76].
● 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.)
● 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.
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Generalized tonic-clonic
Convulsive PNES
epileptic seizures
Tongue/mouth injury Bite to lateral tongue or inside Reported bite to tip of tongue
of cheek, observed injury
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.
Sleep events No No
Burns Unusual No
Tongue/mouth injury Bite to tip of tongue reported Bite to tip of tongue reported
Not all features distinguish between syncope and swoon PNES; no single feature is sufficiently
sensitive or specific to be used alone.
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