Epilepsia, 52(11):2028–2035, 2011

doi: 10.1111/j.1528-1167.2011.03162.x

FULL-LENGTH ORIGINAL RESEARCH

Psychogenic nonepileptic seizure manifestations reported

by patients and witnesses
*Markus Reuber, yzJenny Jamnadas-Khoda, xMark Broadhurst, {Richard Grunewald,
{Steve Howell, yzMatthias Koepp, yzSanjay Sisodiya, and yzMatthew Walker

*Academic Neurology Unity, University of Sheffield, Sheffield, United Kingdom; yDepartment of Clinical and Experimental Epilepsy,
Institute of Neurology, University College London, London, United Kingdom; zEpilepsy Society, Chalfont-St-Peter,
Bucksinghamshire, United Kingdom; xDerbyshire Healthcare Foundation Trust, Matlock, Derbyshire, United Kingdom; and
{Department of Neurology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom

The majority of patients with PNES reported some

SUMMARY
Purpose: Psychogenic nonepileptic seizures (PNES) con-
tinue to represent a serious diagnostic challenge for neu-
rologists. Video–electroencephalography (EEG) studies
have provided detailed knowledge of the spectrum of visi-
ble 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.
Methods: Three 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, Uni-
ted 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 sei-
zure witness. The patient questionnaire contained 12
demographic and clinical questions and the 86-item Par-
oxysmal 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) ques-
tionnaire 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 sei-
zures and syncope or thought to differentiate between
epilepsy and PNES.
Key findings: The item-by-item analysis revealed the
inter- and intraindividual variability of PNES experiences.
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 relation-
ship between PNES and emotional stress than were
patients (p = 0.001/p < 0.001).
Significance: These 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 interindi-
vidual variability of reported PNES manifestations
demonstrates the clinical heterogeneity of PNES dis-
orders. The positive correlation of symptoms of dissoci-
ation and anxiety in these patients may reflect
psychopathologic differences between subgroups of
PNES patients.
KEY WORDS: Nonepileptic attack disorder, Symptoms,
Somatoform disorder, Semiology, Dissociation, Anxiety.

Accepted May 15, 2011; Early View publication July 18, 2011.
Address correspondence to Dr Markus Reuber, Academic Neurology
Unit, Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, U.K.
E-mail: markus.reuber@sth.nhs.uk Psychogenic nonepileptic seizures (PNES) are episodes
Wiley Periodicals, Inc. that superficially resemble epileptic seizures but are not
ª 2011 International League Against Epilepsy caused by epileptic discharges in the brain. They are

2028

paroxysmal events characterized by an impairment of self-
control associated with a range of motor, sensory, and
mental manifestations, which represent an experiential or
behavioral response to distress. The overwhelming majority
of PNES are considered as beyond patients’ voluntary
control (Gates et al., 1998; LaFrance & Devinsky, 2002),
and can be categorized as manifestations of conversion or
dissociative disorder (Reuber, 2009).
PNES are one of the most common differential diagnoses
of epileptic seizures: Between 12% and 18% newly present-
ing to neurologists with blackouts, and about one fourth of
the patients referred to a typical U.S. epilepsy monitoring
unit have PNES rather than epilepsy (Kotsopoulos et al.,
2003; Benbadis et al., 2004; Hitiris et al., 2005).
The visible manifestations of PNES have been studied in
great detail since the introduction of video–electroencepha-
lography (EEG) monitoring 30 years ago (Reuber, 2008).
Although there is no single feature that distinguishes
reliably between PNES and epileptic seizures, a number of
visible observations make a diagnosis of PNES likely
(Avbersek & Sisodiya, 2010).
Our understanding of the subjective symptoms of PNES
is more limited. It has been suggested that many patients
experience physical symptoms of panic or hyperventilation
during their seizures—perhaps without mental symptoms of
anxiety (Snyder et al., 1994; Vein et al., 1994; Witgert
et al., 2005; Goldstein & Mellers, 2006). Even in the
absence of panic symptoms, most patients experience their
seizures as confusing and beyond their control (Green et al.,
2004; Thompson et al., 2009). A study comparing the use of
metaphors found that patients with epilepsy were more
likely to conceptualize their seizures as a hostile, external
agent acting of its own volition, whereas patients with PNES
preferred to talk of their seizures as a space or place into
which they travel (Plug et al., 2009a). In keeping with this
(and unlike patients with epilepsy), patients with PNES
showed resistance to the doctor’s use of the label ‘‘attack’’
for their ictal experiences (for instance, by not using the
term in an answer although the doctor had used it in his
question) (Plug et al., 2009b). Several studies suggest that
(if present) impairment of consciousness tends to be less
profound in PNES than in complex partial epileptic seizures
(Reuber & Kurthen, 2011).
There is also a relative dearth of research into what
patients and witnesses report about seizure manifestations,
although studies relating such reports to observations made
during monitoring with video-EEG have revealed signifi-
cant discrepancies (Rugg-Gunn et al., 2001; Heo et al.,
2008; Syed et al., 2008), suggesting that some ictal observa-
tions that are useful diagnostically if seen on a video-record-
ing (such as the initial eye-opening characteristic of
epileptic seizures) (DeToledo & Ramsay, 1996; Chung
et al., 2006) do not help clinicians without video confirma-
tion (Syed et al., 2010). This does not mean that information
derived from patient or witness reports cannot be used for
2029
PNES Manifestations
the diagnosis; however, it demonstrates that what people
report about seizures should be studied directly rather than
predicted on the basis of video-EEG studies.
The present study is intended to improve our understand-
ing of the phenomenology of PNES as they present to
physicians talking to patients in the outpatient clinic. It
describes seizure manifestations in a large cohort of
securely diagnosed patients. By combining a descriptive
approach, a correlation matrix, and comparisons of patient
and witness statements, this study aims to improve our
understanding of how PNES are experienced and aid the
diagnostic process by making physicians more aware of
what patients and witnesses are likely to tell them about the
seizures.
Patients and Methods
Patients
Potential participants (n = 308) for this study were
identified by consultant neurologists with an interest in
epilepsy at the Royal Hallamshire Hospital, Sheffield, and
the National Hospital for Neurology and Neurosurgery,
London. The diagnosis of PNES had been confirmed in all
patients by the video-EEG recording of at least one seizure
involving impairment of consciousness. All diagnoses of
PNES were made by fully trained neurologists with an
interest in epilepsy on the basis of the patient’s history, the
observed seizure semiology, and the absence of EEG or
electrocardiography (ECG) changes suggestive of epilepsy
or other medical disorders. All recorded seizures were
considered typical of habitual seizures by patients (and
previous seizure witnesses if available). Patients were not
approached if there was any diagnostic uncertainty or if
they had a history of other types of seizures or blackouts
not captured on video-EEG. Patients were excluded from
this study if they were thought to have had previous or con-
current epilepsy or other types of blackouts, or if they
unable to complete the questionnaire without help because
they did not have a sufficient understanding of English or
because of recognized learning difficulties.
The patients identified in Sheffield (n = 180) were diag-
nosed consecutively by video-EEG between 2004 and 2009.
The patients identified in London (n = 128) were diagnosed
consecutively between 2000 and 2008.
Questionnaire
Potential participants were contacted by post with an
information sheet, a patient questionnaire (demographic and
clinical questions followed by the Paroxysmal Event Pro-
file, PEP), a witness questionnaire [Paroxysmal Event
Observer (PEO) questionnaire], and a stamped and
addressed return envelope. They were asked to complete the
patient questionnaire and to ask someone who had seen their
attacks to complete a PEO questionnaire (if possible).
Patients were incentivized by an offer of participation in a
Epilepsia, 52(11):2028–2035, 2011
doi: 10.1111/j.1528-1167.2011.03162.x
2030
M. Reuber et al.
prize draw for a digital radio. A second letter inviting
patients to participate was sent 1 month after the first to
those patients who had not responded.
The patient questionnaire contained 12 demographic and
clinical questions and the 86-item PEP. The profile asks
respondents to rate statements such as ‘‘My attacks often
come on when I am asleep’’ on a five-point Likert scale
(‘‘always,’’ ‘‘frequently,’’ ‘‘sometimes,’’ ‘‘rarely,’’ ‘‘never’’).
The PEO questionnaire uses 34 items with the same Likert
scale. The PEP questionnaire combines questions from a
range of sources. It lists symptoms of panic disorder,
derealization, and depersonalization (posttraumatic stress
disorder, PTSD) from the International Classification of
Mental and Behavioral Disorders, 10th edition, Diagnostic
and Statistical Manual of Mental Disorders, 4th edition,
and Present State Examination, the symptoms of dissocia-
tion captured by the Dissociative Experience Scale Taxon
(DES-T) (Waller et al., 1996; Waller & Ross, 1997), ques-
tions previously found to distinguish between generalized
tonic–clonic seizures and syncope (Hoefnagels et al., 1991;
Sheldon et al., 2002), or thought to differentiate between
epilepsy and PNES (Surmann, 2005). Further questions con-
sidered potentially revealing or relevant were added after a
draft questionnaire based on these sources had been
reviewed by a number of clinicians working in this area (see
Appendix S1 for the full questionnaire).
Data analysis
Differences between respondents and nonrespondents
were examined using chi-square or t-tests, as appropriate.
Descriptive statistics were used in the presentation of the
clinical and demographic data. Some items were combined
to summary scores for the correlational matrix. The sum-
mary scores included ‘‘dissociation’’ (PEP 38R, 39R, 40R,
43R, 45R, 47R, 85R, and 86R), ‘‘flashbacks’’ (32R, 55R,
and 56R), ‘‘anxiety’’ (PEP 16R, 17R, 19R, 20R, 22R, 23R,
31R, 58R, 59R, 61R, 62R, 63R, 64R, and 78R), and ‘‘ictal
motor activity’’ (PEO 15R, 16R, 17R, 18R, 19, 20, 22R,
and 24). Higher scores reflect more frequent and more
diverse symptoms (‘‘R’’ denotes reverse scoring). The
summary ‘‘anxiety’’ score includes cognitive and physical
symptoms of anxiety. The ‘‘dissociation’’ score was based
on the eight items included in the DES-T, focusing on
depersonalization and derealization but also including two
questions about episodic amnesia. These items have been
thought to distinguish between pathologic dissociative
phenomena and more normal experiences like absorption
and imaginative involvement (Waller & Ross, 1997).
There was no item overlap between any of the summary
scores. Items with >10% of missing data were not used in
the correlational matrix. To ensure that data from as many
respondents as possible was captured in the correlational
matrix, missing data were otherwise replaced by the med-
ian score of the particular item prior to the correlation cal-
culations (median item scores ranged from 1–5,
Epilepsia, 52(11):2028–2035, 2011
doi: 10.1111/j.1528-1167.2011.03162.x
representing answers ranging from ‘‘never’’ to ‘‘always’’).
Relationships between the summary scores were examined
by Pearson’s correlation.
Patient and witness responses to three questions that were
identically worded, with the exception of the personal
pronouns, were compared using the Mann-Whitney U
(MWU) test (PEP2, 6, 7 and PEO 3, 1, 2).
In view of the high number of statistical comparisons and
in order to reduce the risk of false-positive findings, only
two-sided p-values of <0.01 were reported as statistically
significant.
Statutory approvals
The study was granted ethical approval by the Northern
and Yorkshire Multi-Centre Research Ethics Committee
and research governance approval by the Sheffield Teach-
ing Hospitals NHS Trust as well as the National Hospital for
Neurology and Neurosurgery.
Results
Of the 308 patients contacted, 100 (32%) responded to
the questionnaire and took part in this study; 71% of the
respondents were women. Respondents’ ages ranged from
19–81 years [mean 41.7, standard deviation (SD) 13.6]. The
mean age of the nonrespondents was 37 years (SD 12.4);
71% of nonrespondents were female. There were no signifi-
cant differences between respondents and nonrespondents
in terms of age and gender ratio. Eighty-four (84%) of the
PEP questionnaires returned were accompanied by PEO
questionnaires completed by witnesses. The witnesses had
known the patients for a mean of 16.9 years (SD 15.8).
There were no significant demographic differences between
participants from London or Sheffield. A median of 5%
(range 0–12%) of items on the PEP and a median of 4%
(range 0–25%) on the PEO questionnaire were left blank
and filled with medium item scores.
Respondents had first developed seizures a mean of
12.9 years (SD 12.5) before the study. Ten percent of
respondents had not had a seizure over the year preceding
the study, 7% had 1–5 attacks, 40% had 6–50, and 43% had
>50. Twenty-four percent of the participants had never been
admitted to hospital acutely with a prolonged seizure, 17%
had been admitted once, 31% two to five times, and 28%
more than five times. Sixteen percent of respondents
reported at least one admission to an intensive care unit with
an attack. The same number reported attacks, blackouts, or
epilepsy in immediate family members. Twenty-five per-
cent of patients stated that they had experienced a head
injury with loss of consciousness (nor necessarily before the
onset of seizures), 1% a history of meningitis, and 4% a his-
tory of febrile seizures in childhood. Table 1 shows the
replies to some of the items included in the PEP (1a) and
PEO questionnaire (1b); Appendix S1 is a table with the
responses to all questions.
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PNES Manifestations

Table 1. (a) Respondents replies to some of the items on the PEP and (b) PEO questionnaires
Item Always (%) Frequently (%) Sometimes (%) Rarely (%) Never (%)
(a)
Triggers/warnings
I am aware of a trigger for my attacks 10 4 44 9 31
My attacks are associated with emotional stress 8 9 47 13 23
My attacks come on when I am asleep 3 8 43 10 36
My attacks come on out of the blue without any warning 43 24 25 2 6
Ictal symptoms
In my attacks I feel a rising sensation in my body 14 15 28 5 38
My attacks cause a bad taste in my mouth 14 10 16 6 54
In my attacks I feel sick 5 6 24 24 41
In my attacks I have a sense of feeling I’ve seen something 0 5 14 8 73
before when I have not
During my attacks memories seem to flash into my mind 2 11 14 6 64
During my attacks I have no idea what is happening around me 30 25 26 5 14
In my attacks I am conscious but I can’t react to things 28 20 28 1 23
During my attacks I feel very frightened 18 17 37 8 20
Postictal symptoms
I wake from my attacks with a cut tongue 1 4 20 13 62
After my attacks I find that I have burned myself 4 1 7 8 80
After the attacks my muscles ache 36 26 22 9 7
(b)
Triggers/Warnings
There are triggers form the attacks 11 14 43 11 21
The attacks come on out of the blue without any warning 49 27 17 5 2
Ictal symptoms
Attacks cause falls 38 23 26 6 7
The attacks involve a complete loss of consciousness 56 19 8 5 12
or blackout
Loss of consciousness, loss of awareness or loss of 45 18 19 2 15
speech last over 1 min
Shaking of the arms and legs goes on for more than 1 min 26 26 20 4 24
The attacks involve chewing, smacking, or licking 21 12 16 12 39
movements of the mouth and lips
The attacks involve fiddling, picking, or fumbling 17 18 11 17 38
movements of the hands
The eyes are mostly open in the attacks 21 13 32 10 24
In the attacks the head moves rapidly from side to side 14 16 30 12 29
The head turns to one side in the attacks 6 8 21 23 22
The mouth is tightly shut during the attacks 7 16 52 11 14
The attacks involve crying or weeping 2 4 24 8 62
The attacks involve arching of the back 17 11 14 26 32
The attacks involve trembling 27 31 21 1 19
The attacks involve violent shaking of arms and legs 24 20 17 17 23
The arms and legs are rigid in the attacks 11 13 33 16 24
The arms and legs are limp in the attacks 12 16 29 13 31
Attacks look a bit like normal sleep 8 7 18 8 58
The attacks involve frothing from the mouth 6 2 11 8 72
The skin and lips look blue in the attacks 8 11 24 13 44
Postictal symptoms
I am immediately recognized after the attacks 33 23 31 6 1

Statistically significant correlations of clinically defined
dimensions are shown in Table 2. All dimensions excluding
duration (n = 93) and ictal motor activity (n = 84) are based
on 100 patient responses. There were no significant correla-
tions between the seizure frequency category, hospitalization
frequency, history of intensive care admission, and any of the
other dimensions included in the table. The respondents’ ages
at PNES onset and at the time of completion of the question-
naire correlated positively with each other. The age at onset
correlated negatively, and the age at completion of the ques-
tionnaire positively with the duration of the disorder.
Table 3 shows the comparison of responses to three key
questions about seizures on the PEP and PEO questionnaires,
which differed only in terms of the personal pronoun used
(these were the only questions that differed in this way).
Witnesses thought that seizure triggers could be identified

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M. Reuber et al.

Table 2. Correlation matrix of clinically defined dimensions

Duration Dissociation Flashbacks Anxiety Motor From sleep
Duration X n. s. n. s. n. s. n. s. )0.28 (p = 0.006)
Dissociation X X 0.66 (p < 0.001) 0.53 (p < 0.001) n. s. n. s.
Flashbacks X X X 0.44 (p < 0.001) n. s. n. s.
Anxiety X X X X
Motor X X X X X )0.48 (p < 0.001)
From sleep X X X X X X
n. s.: not significant.

picture. Most state that seizure-related falls, shaking, or

Table 3. Comparison of patient and witness
limpness of the limbs and rapid reorientation occur in some
responses (ordinal scale: 5 = always, 4 = frequently,
3 = sometimes, 2 = rarely, 1 = never) but not all attacks.
Patients’ and witnesses’ responses to several items dem-
Mean patient Mean witness onstrate the phenomenologic overlap between epilepsy and
response response Significance
PNES. This illustrates why it can be so difficult to differen-
Question category (SD) category (SD) (MWU test)
tiate between these two seizure disorders on the basis of fac-
I am (there is) a 2.5 (1.3) 2.8 (1.3) 0.001
tual items in patient or witness accounts (Syed et al., 2010),
trigger for the
attacks and suggests why the diagnosis of PNES is typically delayed
My (the) attacks 2.7 (1.2) 2.8 (1.3) <0.001 by several years (Reuber et al., 2002). The majority of
are associated patients with PNES report some phenomena, which have
with emotional traditionally been attributed to epilepsy (such as seizures
stress
from reported sleep, feeling sick or experiencing a rising
My (the) attacks 4.0 (1.2) 4.2 (1.0) n. s.
come on out of sensation in their body, postictal myalgia). Similarly, the
the blue without majority of witnesses describe open eyes, behaviors sugges-
any warning tive of oral and manual automatisms and cyanosis (in at
least some attacks). Some features thought to be more com-
mon in PNES than epilepsy (including ictal weeping and
significantly more often than reported by patients and that seizures looking like normal sleep) are rarely experience or
more seizures were related to emotional stress. A question observed. Confusingly, rapid side-to-side head movements
about ictal impairment of consciousness was not worded (described as indicative of PNES in video-EEG studies)
identically on the PEP and PEO questionnaires, but responses (Gates et al., 1985; Groppel et al., 2000) are reported as less
to two closely related questions suggested that witnesses common by the observers of PNES than are unilateral head
reported more frequent events with complete loss of con- turns (which occur in many focal epileptic seizures). Some-
sciousness than patients did (PEP: ‘‘during my attacks I have what more helpfully, dj vu, ictal tongue biting, burns, and
no idea what is happening around me’’/PEO: ‘‘the attacks frothing from the mouth (pointing to a diagnosis of
involve complete loss of consciousness or blackout’’). epilepsy) were never experienced by the majority of
patients. However, even these items were reported by signif-
icant minorities of PNES patients or witnesses.
Discussion Although the item-level analysis illustrates the inter- and
The range of patients’ responses to the PEP questionnaire intraindividual heterogeneity of the phenomenology of
reveals the experiential heterogeneity of PNES. Almost one PNES, the correlational matrix reveals that PNES symptoms
half of the respondents always experience their attacks as are not randomly distributed. A longer duration of the
striking out of the blue and without any warning, but just seizure disorder was associated with a lower proportion of
over 50% report being aware of triggers for, at least, some seizures from (self-reported) sleep. This observation sug-
of their seizures. More than two thirds of patients regularly gests that sleep-related seizures are particularly likely to be
feel frightened in their attacks but one in five never does. reported in the earlier phase of PNES disorders, when the
Whereas nearly one third of patients report being com- diagnosis may still be uncertain. Unlike epileptic seizures,
pletely unaware of their surroundings in all attacks, a similar nocturnal PNES typically occur from ‘‘pseudosleep’’
number remains conscious of their environment but are (characterized by the EEG appearances of wakefulness)
unable to react to it. The majority of patients experience (Benbadis et al., 1996), although apparently ‘‘sleep’’-related
either state in different attacks. The responses from the sei- PNES are self-reported by one half of PNES patients
zure witnesses to the PEO questionnaire also paint a varied (Duncan et al., 2004). The witnesses’ reports revealed that

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doi: 10.1111/j.1528-1167.2011.03162.x

the seizures of patients claiming to have had more seizures
from sleep were characterized by less motor activity
(rigidity and shaking).
Significant correlations were also found between scores
reflecting symptoms attributed to different forms of psycho-
pathology in the current diagnostic manuals of mental disor-
ders. There was a strong association between symptoms of
dissociation (depersonalization, derealization, and amnesia)
and flashbacks. This may not be surprising given their
co-occurence in conditions such as posttraumatic stress dis-
order or borderline personality disorder, and the links of all
of these symptoms with a previous history of trauma. The
positive correlation between the symptoms of anxiety and
dissociation is more interesting. Whereas some patients
report few anxiety and dissociative symptoms, other
patients frequently experience both types of symptoms.
PNES have previously been interpreted as a dissociative
response to physical arousal, or as ‘‘panic attacks without
panic’’ (paroxysmal physical symptoms of panic without
cognitive symptoms of anxiety) (Goldstein & Mellers,
2006).
Our data based on patients’ experience rather than objec-
tive measures of physiologic arousal cannot refute this
model. However, we note that the majority of respondents
to our questionnaire ‘‘never’’ experienced any of the items
captured on the DES-Taxon as characteristic of ‘‘pathologi-
cal dissociation.’’ Furthermore, the correlation matrix sug-
gests that there are markedly different forms of PNES
experience. This means that it is questionable whether one
explanatory approach fits all cases in this context. It inter-
esting to speculate whether the combination of high levels
of anxiety and features of dissociation (especially flash-
backs) relate to a particular etiology (one previous study
showed that this combination of symptoms was more likely
in patients with antecedent sexual abuse) (Selkirk et al.,
2008). Of course, there may be a difference between having
symptoms of anxiety/dissociation and being aware of or
reporting them (Reuber & Kurthen, 2011). It is also possible
that the adaptation of the DES-taxon used here fails to mea-
sure the relevant form of dissociation (Lawton et al., 2008).
However, neither the descriptive analysis of questionnaire
items relating to phenomena typically interpreted as disso-
ciative nor the correlation matrix lends support to the idea
that patients with PNES experience dissociative symptoms
instead of anxiety or that patients increasingly dissociate
from unpleasant symptoms of arousal as their disorder
becomes more chronic.
There were interesting differences between patients’ own
perceptions of their seizures captured by the PEP and wit-
nesses’ observations recorded on the PEO questionnaires.
Patients were less often aware of seizure triggers and emo-
tional stress than witnesses were. This finding may reflect
the alexithymia that characterizes many patients with PNES
(Bewley et al., 2005), or their cognitive bias against a psy-
chological explanation for their seizures (Stone et al.,
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PNES Manifestations
2004). The replies to the PEP and PEO questionnaires also
indicate that witnesses may overestimate patients’ degree of
unconsciousness.
This study has a number of limitations. There were at
least two sources of possible selection bias: first, all patients
described in this study had presented to specialist units and
had video-EEG documented seizures. Responses in these
patients may differ from the one third of patients with PNES
who will fail to have seizures during even prolonged video-
EEG monitoring. Second, only one-third of the patients
invited to participate in this study returned the PEP ques-
tionnaire and one in six of the respondents could not provide
a matching PEO. Although we did not find any demographic
markers of a responder bias, it is possible that the subgroup
of responders is not characteristic of all patients with PNES.
Patients who are unable or unwilling to say much about the
symptomatology of their seizures may have been underrep-
resented in the group of responders to the survey. It is
important to recognize that (at this point) the findings in this
patient group with chronic PNES disorders and their friends,
family members, or carers cannot be generalized to patients
presenting with seizures of recent onset. However, given
that most diagnoses of PNES are made only after patients
have been treated for epilepsy for many years (Reuber et al.,
2002), the results may still be directly relevant in the diag-
nostic process. It is also conceivable, that the responses of
patients or observers to the questionnaires (especially with
regard to triggers or reported emotional symptoms) were
influenced by the fact that they had received the diagnosis
of PNES and that their neurologist had explained this condi-
tion to them. Furthermore, we have no other information
about patients’ state of mind while completing the question-
naire other than the responses provided on the question-
naire. Most importantly, we do not know whether some of
the responses (for instance the report of anxiety or dissocia-
tive symptoms) may have been influenced by comorbid
depression. Lastly, we should point out that small differ-
ences in how a question is put can have big effects on how it
is answered. It is possible that some replies would be differ-
ent if questions were asked face-to-face in the clinic rather
than included in a questionnaire.
Despite these drawbacks, a number of conclusions can be
drawn: Although most PNES are experienced as striking
without warning and are reported to cause loss or impair-
ment of consciousness, there is considerable intra- and inter-
individual variability. Our analysis based on the reports of
seizure manifestations by patients and witnesses, therefore,
offers further support for the clinical heterogeneity of PNES
disorders described previously on the basis of video-EEG
observations (Gates et al., 1985). Future comparisons with
responses from patients with epilepsy will need to test
whether the intraindividual variability observed here is a
diagnostic pointer to PNES rather than epilepsy. The posi-
tive correlation of symptoms of dissociation and anxiety in
these patients suggests that there may reflect important
Epilepsia, 52(11):2028–2035, 2011
doi: 10.1111/j.1528-1167.2011.03162.x
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M. Reuber et al.
psychopathologic differences between subgroups of PNES
patients. Placing too much emphasis on patients’ or wit-
nesses’ responses to individual factual items may risk
incorrect diagnoses. We have previously shown that it is
diagnostically relevant to consider whether patients have
volunteered seizure symptoms or whether significant
prompting was required in the history-taking process (Reu-
ber et al., 2009). The discrepancies between patients’ and
witnesses’ assessments of the relevance of seizure triggers
and emotional stress demonstrate that it is also important to
consider who has provided clinical information when con-
sidering its diagnostic significance.
Acknowledgments
This study was supported by the Sheffield Hospitals Charitable Trust.
We would like to thank Dr Richard Brown and Mike Bradburn for their
advice on the data analysis. This work was partly undertaken at University
College London Hospitals/University College London, which received a
proportion of funding from the Department of Health’s National Health
Research Biomedical Research Centres funding scheme.
Disclosures
None of the authors has any conflict of interest to disclose in relation to
this publication. We confirm that we have read the Journal’s position on
issues involved in ethical publication and affirm that this report is consistent
with those guidelines.
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Supporting Information
Additional Supporting Information may be found in the
online version of this article:
2035
PNES Manifestations
Appendix S1. Responses to the PEP and PEO question-
naires. One hundred patients with proven PNES completed
the PEP questionnaire.
Please note: Wiley-Blackwell is not responsible for the
content or functionality of any supporting information
supplied by the authors. Any queries (other than missing
material) should be directed to the corresponding author for
the article.
Epilepsia, 52(11):2028–2035, 2011
doi: 10.1111/j.1528-1167.2011.03162.x