• Markus Reuber, Jenny Jamnadas-Khoda, Mark Broadhurst, Richard Grunewald, Steve Howell, Matthias Koepp, Sanjay Sisodiya, and Matthew Walker.
• Academic Neurology Unity, University of Sheffield, Sheffield, United Kingdom. markus.reuber@sth.nhs.uk
• Epilepsia. 2011 Nov 1;52(11):2028-35.

PurposePsychogenic nonepileptic seizures (PNES) continue to represent a serious diagnostic challenge for neurologists. Video-electroencephalography (EEG) studies have provided detailed knowledge of the spectrum of visible PNES manifestations. However, little is known about how patients or seizure witnesses experience PNES, although many diagnoses in seizure clinics are made on the basis of self-reported information rather than video-EEG observations. This study describes the range of PNES manifestations as they are reported by patients or seizure witnesses.MethodsThree hundred eight candidates for this study were consecutively diagnosed with PNES on the basis of video-EEG recordings of habitual seizures involving impairment of consciousness without epileptic ictal EEG activity at the Royal Hallamshire Hospital in Sheffield and the National Hospital for Neurology in London, United Kingdom. One hundred patients responded to a postal questionnaire and participated in this study. Eighty-four of the questionnaires completed by patients were accompanied by questionnaires completed by seizure witness. The patient questionnaire contained 12 demographic and clinical questions and the 86-item Paroxysmal Event Profile (PEP), asking patients to rate statements about their attacks on a five-point Likert scale ("always,"frequently,"sometimes,"rarely,"never"). The Paroxysmal Event Observer (PEO) questionnaire uses 34-items with the same Likert scale. The PEP questionnaire includes inquiries about symptoms of panic or dissociation as well as symptoms previously found to distinguish between generalized tonic-clonic seizures and syncope or thought to differentiate between epilepsy and PNES.Key FindingsThe item-by-item analysis revealed the inter- and intraindividual variability of PNES experiences. The majority of patients with PNES reported some phenomena, which have traditionally been attributed to epilepsy (such as seizures from sleep, experiencing a rising sensation in their body, postictal myalgia). Although most PNES were experienced as striking without warning and reported to cause loss or impairment of consciousness, most patients also reported seizure warnings in at least some of the seizures. Despite the clinical heterogeneity apparent from these findings, a correlation matrix showed that symptoms were not randomly distributed. Significant correlations were seen between duration of seizures and seizures from reported sleep (r = -0.28, p = 0.006), seizure-related motor activity and seizures from reported sleep (p = -0.48, p < 0.001), flashbacks and anxiety (p = 0.44, p < 0.001) or dissociation (p = 0.66, p < 0.001), and anxiety and dissociation (r = 0.53, p < 0.001). The comparison of similarly worded items on the PEP and PEO questionnaires showed that witnesses were more often aware of seizure triggers and a relationship between PNES and emotional stress than were patients (p = 0.001/p < 0.001).SignificanceThese findings based on the self-report of patients with well-characterized PNES and witnesses of their seizures demonstrate why it can be difficult to distinguish descriptions of PNES from those of epilepsy on the basis of factual items. The differences between patient and witness reports suggest that clinicians have to take note of the source of information they use in their diagnostic considerations. The intra- and interindividual variability of reported PNES manifestations demonstrates the clinical heterogeneity of PNES disorders. The positive correlation of symptoms of dissociation and anxiety in these patients may reflect psychopathologic differences between subgroups of PNES patients.Wiley Periodicals, Inc. © 2011 International League Against Epilepsy.

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