Download Pick_et_al._Manuscript_text_with_all_tables

Survey
yes no Was this document useful for you?
   Thank you for your participation!

* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project

Document related concepts

Eating disorders and memory wikipedia , lookup

Biology of depression wikipedia , lookup

Claustrophobia wikipedia , lookup

Conversion disorder wikipedia , lookup

Wernicke–Korsakoff syndrome wikipedia , lookup

Dissociative identity disorder wikipedia , lookup

Transcript
REVISION
Final version published online: 19-JAN-2016 Full bibliographic details: Epilepsy
& Behavior (2016), pp. 5-14 DOI information: 10.1016/j.yebeh.2015.12.010
Emotion and dissociative seizures: a phenomenological analysis of patients’
perspectives
Susannah Picka, John D.C. Mellersb, & Laura H. Goldsteina,*
a. King’s College London, Department of Psychology, Institute of Psychiatry, Psychology and
Neuroscience, De Crespigny Park, London SE5 8AF, United Kingdom. (emails:
[email protected]; [email protected])
b. Neuropsychiatry Department, Maudsley Hospital, South London and Maudsley NHS
Foundation Trust, London SE5 8AZ, United Kingdom. (email [email protected])
*Correspondence to: Prof Laura H Goldstein. King’s College London, Department of
Psychology, PO77, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park
London, UK, tel ++44 220 7848 0218. Email: [email protected]
Abstract
Quantitative research has indicated that patients with dissociative seizures (DS) show
altered responses to emotional stimuli, in addition to considerable emotional distress and
dysregulation. The present study sought to further explore emotional processes in this
population, to extend previous findings and provide a phenomenological insight into
patients’ perspectives on these issues. Semi-structured interviews were carried out with 15
patients with DS and the principles of interpretative phenomenological analysis (IPA) were
adopted in data analysis. Key themes elicited included: i) general emotional functioning; ii)
adverse (stressful/traumatic) life experiences; iii) the role of emotions in DS; (iv) relating to
others; and v) resilience, protective factors and coping mechanisms. The clinical and
theoretical implications of the findings are discussed.
Key words: dissociative seizures, non-epileptic seizures, psychogenic seizures, emotion,
qualitative, phenomenological
1. Introduction
Dissociative (non-epileptic, psychogenic) seizures (DS) are paroxysmal phenomena classified
as a dissociative disorder in ICD-10 [1] and a conversion (somatic symptom) disorder in
DSM-5 [2]. DS are superficially similar to epileptic seizures (ES) in many respects but tend
not to exactly mimic the stereotypies of ES, often being of longer duration, with waxing-andwaning symptom severity and unusual configurations of symptoms [3,4]. Diagnostic
investigations yielding an absence of epileptiform electrophysiological activity contiguous
with seizure occurrence (i.e. video-encephalography; video-EEG), or a lack of significant
neurological abnormalities characteristic of epilepsy are indicative of a DS diagnosis.
Moreover, a diagnosis of DS requires the exclusion of any other potential underlying
psychiatric or physical illness, such as psychosis, substance-withdrawal, or transient
ischaemic attacks.
Much of the previous psychological literature on DS has depended on quantitative data
obtained through self-report measures (i.e. interviews, questionnaires), and clinical case
note reviews. This literature has provided important insights into possible aetiological
factors in the disorder. Possible contributory factors include adverse life experiences (i.e.
trauma, stress, relationship disturbances), dysfunctional personality profiles and coping
techniques, subtle neurocognitive abnormalities, comorbid psychopathology, and frequent
somatoform and psychological dissociative experiences [5-15]. However, an important
limitation in the extensive use of quantitative methods is the lack of insight gained into the
phenomenological experience of the patients, and their important perspectives on the
research questions under investigation.
Abbreviations: DS = dissociative seizures; ICD-10 = International Classification of Diseases (10th ed); DSM-5
= Diagnostic and Statistical Manual of Mental Disorders (5th ed); ES = epileptic seizures; IPA = Interpretative
Phenomenological Analysis
Qualitative techniques can be used to provide a richer understanding of the unique
meanings that individuals ascribe to their experiences [16]. Increasing numbers of
investigators have adopted qualitative techniques in studies of DS in the last decade. For
example, several investigators have used semi-structured interviews or linguistic analysis to
examine patients’ reactions to receiving the diagnosis [17-20]. These studies highlighted
several themes in patients’ responses to the diagnosis, particularly feelings of confusion
about the nature of the disorder, relief and feeling like a ‘normal’ person again (i.e. due to
not having a chronic neurological condition). Issues relating to provision and patients’
experiences of treatment have also been examined qualitatively [20-24].
Other authors have adopted qualitative techniques when investigating DS patients’
experiences and understanding of their disorder. Carton et al. [17] , for example, reported
themes relating to patients’ conceptualisations of their seizures. Some patients experienced
their seizures as a release of accumulated emotion, stress, or as in some way related to
previous traumatic experiences. In addition, many of the sample reported considerable
negative consequences of DS on other areas of life, such as employment, self-esteem, social
isolation and anxiety. Furthermore, Dickinson and colleagues [25] used thematic content
analysis to explore patients’ perspectives on their disorder and noted that some patients
linked their disorder to both early (e.g. head injury, physical assault, exposure to epilepsy)
and recent (e.g. divorce, bereavement, legal proceedings) adverse life events. Others [26]
noted that DS patients tended to discuss the disorder dualistically as either organic or
psychological, rather than acknowledging the possibility that psychological factors can
interact with physical processes. Clearly, qualitative techniques have much to offer in
enhancing our understanding of the experiences of individuals with DS, and may also serve
to generate hypotheses for further quantitative testing.
4
Historically and contemporarily, abnormal emotional processes have been posited to play a
crucial role in triggering or underlying DS [27-30]. Recent experimental research has
yielded findings supportive of the hypothesis that patients with DS exhibit altered emotional
functioning [31-34], including differences in attentional, behavioural and subjective responses
to affective stimuli. Moreover, patients with DS report altered emotional states prior to
and/or during the seizures, such as autonomic arousal and/or panic symptoms [28,35,36], in
addition to dissociative symptoms [35,36]. However, patients’ perspectives on their
emotional processing styles and responsivity have not yet been examined specifically with
qualitative methods, neither have patients’ reports of emotional experiences during their
seizures. Qualitative investigation of emotional processes in this patient group is, therefore,
an important supplement to quantitative studies in this area, as a means of providing a more
detailed account of patients’ experiences.
This study sought to explore the following research questions, using qualitative methods:
1. How do patients with DS perceive their general emotional functioning?
2. To what extent can patients with DS reflect on and understand the possible role
of emotions in the onset of the disorder and/or ongoing seizure generation?
3. How do patients with DS perceive their ability to recognise and understand the
emotions of others?
2. Materials and methods
Semi-structured interviews were conducted with a small sample of patients recently
diagnosed with DS, prior to undergoing psychological therapy for the disorder. The
5
research followed as closely as possible the recommendations made by proponents of IPA
[37].
2.1. Participants
Recruitment for the study took place between January 2011 and August 2012. Ethical
approval was granted by the Joint South London and Maudsley and Institute of Psychiatry
NHS Research Ethics Committee (reference 08/H0807/82). Eligibility criteria for inclusion
in the study were: i) having received a diagnosis of DS based on video-EEG monitoring
and/or consensus clinical opinion (the shared opinion of at least two consultant
neuropsychiatrists, neurologists, or epileptologists), ii) being 18-65 years of age iii) having an
estimated intelligence quotient (IQ) of 70 or greater, iv) being fluent in English, and v) not
having documented epilepsy, significant medical illness, current major depression, anxiety,
substance dependence, or psychosis. All patients were recruited from tertiary referral
neuropsychiatry services at the South London and Maudsley NHS Foundation Trust. Prior
to participation, participants provided written informed consent.
2.2. Procedure
The interviews lasted approximately 30 to 90 minutes. Fourteen interviews took place in a
psychology laboratory, and one in the patient’s home. The same interviewer (SP) carried
out all interviews; at the time, a female postgraduate student with no personal experience of
dissociative/conversion disorders but with a good knowledge of relevant empirical and
theoretical literature. The interviews were recorded digitally, with patients’ permission.
The same interview schedule was used flexibly for all patients (Appendix 1). The questions
focused on the following topics: general emotional functioning, responses to emotionally
upsetting events/situations, understanding of others’ emotions, involvement of emotions at
6
the time of initial seizure onset, involvement of emotions in ongoing seizure occurrence,
peri-ictal emotions, and more general ideas about the links between DS and emotions.
2.3. Data analysis
Interviews were transcribed verbatim and the transcriptions were anonymised. In IPA, the
analyst engages actively with the transcript and aims to interpret the meanings implicit in the
data. The following steps were taken in analysing the data: i) identification of themes in the
first transcript, ii) theme connection within the first transcript, iii) adding additional
transcripts to the analysis, and iv) developing the final classification scheme. More detail is
provided in Supplementary File 1.
During data analysis, notes were made when there was a possible influence of the analyst’s
background or characteristics on interpretation of the data; efforts were made to minimise
the influence of such characteristics on the interpretations made. A second member of the
research team (LG) examined a subsample of transcripts independently, blind to the themes
that had been identified by the interviewer (SP). The themes identified by the second rater
were very similar to those identified by the first; however, some small modifications were
subsequently made to the hierarchy of themes where minor disparities had emerged.
Furthermore, a preliminary summary of the main findings was sent to two patients who had
participated in the study. One of the patients responded, confirming that the summary was
understandable, acceptable and reflected her viewpoints on the topics discussed.
7
3. Results
3.1. Participant characteristics
Fifteen participants took part in the study. The demographic characteristics and duration of
DS disorder for each participant are presented in Table 1.
Table 1 near here
3.2. Overview of themes
Several superordinate themes emerged during the analysis, partially reflecting the topics
covered in the interview schedule. These were themes relating to: i) general emotional
functioning; ii) adverse (stressful/traumatic) life experiences; iii) the role of emotions in DS;
(iv) relating to others; and v) resilience, protective factors and coping mechanisms. The
themes and subthemes are presented with representative quotations in Tables 2 to 6.
3.3. General emotional functioning
One cluster of themes related to patients’ perceptions of their general emotional
functioning (Table 2). For some, the phenomena described seemed to represent long-term
tendencies rooted in development. Other patients indicated that the experiences were
more specific to a given time in their lives.
Table 2 near here
3.3.1. Negative affect
The experience of aversive affective states was common to almost all patients. Patients
often felt that this was exacerbated by, or a direct consequence of the symptoms of DS or
8
other somatic concerns (statement 1). Others described previous periods of depression in
relation to stressful/traumatic life events or circumstances (statement 2). Some patients
described a specific lack of positive affect that appeared to be relatively long-standing
(statement 3).
3.3.2. Affect dysregulation
Lability of mood state was also common, with patients describing extremes of emotion
occurring within short periods of time (i.e. a day), labelled ‘ups and downs’ (statements 4 –
5). One patient felt that this tendency had worsened since the onset of DS. Discrete
episodes of excessive emotional expression were also a commonality, including weeping,
aggression, and destructive behaviours (statement 6-7). Some patients also recognised that
they experienced difficulties in calming down once upset (statements 8-9), and that these
patterns might be linked to the ongoing ‘bottling-up’ of their emotions.
3.3.3. Inhibited experience and expression of negative affect
A very common theme was the marked inhibition of the experience of negative emotion.
This was referred to as ‘closing down’ or ‘shutting off’ unwanted feelings or mood states
(statements 10-11). This theme was linked to another coping strategy involving
behavioural/social ‘shutting down’ (see section 3.7.3). Patients frequently talked of “bottlingup” unpleasant emotions, that is, inhibiting expression of such emotions to others
(statements 12-13). A related feature was that of “putting on a brave face”, presenting an
artificially positive/confident persona to others, despite this being incongruent with internal
affective states. This sub-theme was connected to a belief that the expression of feelings
and emotions might be a burden to others (see section 3.6.3).
9
Experiential or expressive emotional inhibition was often described as long-standing, and
attributed to events/situations that had occurred during childhood/adolescence in some
cases (statements 14-15). Some patients referred to a possible relationship between these
tendencies and the occurrence of seizures, and/or indicated awareness of the maladaptive
nature of these patterns (statements 16-17).
3.3.4. Rumination
Rumination about unpleasant emotions or upsetting experiences was commonly described
(statement 18). For some, these ruminative thoughts were referred to as somewhat
intrusive and not within voluntary control. For others, this tendency was described as being
more of a controlled analysis of emotional episodes.
3.3.5. Emotions linked to physical feelings
Many patients perceived strong interconnections between emotional states and physical
experiences. For example, emotion was described as causing physical discomfort or pain,
motor symptoms, and/or tiredness/exhaustion (statements 19-21). Several patients also
experienced sleep disturbances such as insomnia and night-terrors as a result of stress or
anxiety (statements 22-23), which were also linked to more general sleep problems in some
cases (section 3.4.4). Some patients were able to describe acute awareness of physiological
changes (e.g. heat, shaking, heart-racing) during acute emotional arousal, particularly anger
(statement 24).
3.4. Stressful/adverse life experiences or circumstances
Patients reported a wide range of stressful and/or adverse events and circumstances (Table
3).
10
Table 3 near here
3.4.1. Relationship/interpersonal problems
Some patients described current relationship problems, including conflict, intimate
relationship breakdown and difficulties in forming relationships with others (statements 2526). Other patients referred to relationship problems that had affected them in the past
(statements 27-28).
3.4.2. Abuse
A recurrent theme was the experience of interpersonal abuse, often during childhood
(statements 29-30). Some patients described having ‘locked away’, buried or suppressed
these experiences (statement 29). For some patients, abusive experiences had also
occurred during adulthood (statements 31-32), including domestic abuse, physical assault,
and workplace bullying.
3.4.3. Generally stressful circumstances
Some patients tended to describe their lives as generally stressful, and/or traumatic. For
some, there was a chronic or long-term nature to the stressors and often multiple stressors
or traumas were reported (statements 33-34).
3.4.4. Somatic concerns and symptoms
Almost all patients described additional somatic illness, symptoms or concerns (statements
35-38). The most commonly reported were pain and sleep disturbances.
11
3.5. The role of emotions in DS
Themes relating to the role of emotion in DS (Table 4) included the linkage of DS
occurrence to life stressors/traumatic events, viewing DS as a release of emotion, and an
inconsistent temporal relationship between emotional triggers and DS. Several patients
described emotions/experiences that commonly occurred post-ictally.
Table 4 near here
3.5.1. DS onset linked to stress / trauma
Stressful circumstances or elevated stress levels were often described as having occurred at
onset of the disorder, or immediately preceding this (statements 39-48). Such experiences
included medical/somatic crises or procedures, traumatic life events (i.e. physical/sexual
assault), and relationship breakdown or crises. Other stressors included moving home,
occupational stress, bereavement and physical/mental exhaustion. Some patients described
multiple life stressors occurring prior to DS onset.
3.5.2. DS as emotional ‘relief’ after a ‘build up’
DS were associated with switching off from emotional distress or strong emotions by
several patients (statement 49). Some patients felt that their seizures had originally been
triggered by a build-up of emotional distress (statement 50). Feelings of well-being or relief
following a seizure were also described (statement 51).
12
3.5.3. Inconsistent emotional triggers for DS
The relationship between DS occurrence and emotional states was perceived as
unpredictable by the majority of patients (statement 52). One patient mentioned that her
DS used to be preceded by fear consistently, but that now they seemed to be triggered by
the experience of any strong emotion (statement 53).
3.5.4. Post-ictal emotions / experiences
A total lack of emotion was most often described during DS, during which patients reported
not feeling anything at all. On the other hand, emotional reactions and experiences after DS
were more common (statements 54-56), including frustration, tiredness, weeping, but also
relief in some cases (see section 3.5.2).
3.6. Relating to others
Relationships with others were discussed frequently by patients (Table 5).
Table 5 near here
3.6.1. Interpersonal sensitivity
Most patients reported being sensitive to other people’s mental states. Some viewed this as
a positive trait (statement 57). However, some suggested that it could at times lead to
misinterpreting social signals, or that it might be better not to be so aware of others’ mental
states/emotions (statement 58). Some patients linked their interpersonal sensitivity to
developmental experiences (statement 59).
13
3.6.2. Caring for and supporting others
Patients described being caring and supportive of other people. Several patients reported
being the person that ‘people come to with their problems’, despite rarely sharing their own
concerns and issues (statements 60 – 61).
3.6.3. Being a burden to others
Several patients described their emotions or seizures as a possible burden on others, and
clearly avoided disclosing their difficulties (e.g. statements 62-63). This was also connected
to a need for independence and control, and viewing themselves as strong and resilient (see
section 3.7).
3.7. Resilience, protective factors and coping strategies
A range of factors were discussed that were perceived as being positive in patients’
functioning or that facilitated coping with their difficulties (Table 6).
Table 6 near here
3.7.1. Resilience
Several patients described themselves as being emotionally ‘strong’, a ‘fighter’, tough and
able to cope with adversity (statements 64-65). Moreover, some perceived themselves as
positive/optimistic, with a ‘glass half full’ outlook on life (statements 66-67). Several patients
referred to a high need for control and independence in, and found that the occurrence of
DS had significantly reduced their experience of confidence and autonomy in this regard
(statement 68).
14
3.7.2. Protective factors
A range of protective factors were mentioned. Spouses, family members and friends were
often discussed in positive terms, as sources of support and encouragement (statement 69).
Additionally, some patients described academic and occupational success (statements 7071). For some patients, work provided a relief from difficult life circumstances or emotions
(statement 72).
3.7.3. Coping strategies
The use of coping strategies was evident in most of the sample. These strategies most
commonly involved attentional and behavioural distraction techniques, in addition to
relaxation strategies such as meditation, martial arts, and enjoyment of music or nature
(statements 73-75). A common, but less adaptive strategy was self-isolation and behavioural
avoidance of social situations during times of acute emotional distress (statements 76-77),
labelled ‘shutting down’ by several patients.
4. Discussion
The aim of the study was to gain further insight into the emotional experiences of patients
with DS, and how patients perceive their emotions to relate to the onset and recurrence of
their seizures. It was hoped that examining these issues qualitatively would enrich and
extend previous quantitative findings suggestive of aberrant emotional processing in this
population.
It is known that patients with DS often present with significant emotional distress (e.g.
depression, anxiety) and emotional dysregulation [9,38]. The current study suggests that
the frequent experience of negative affect and mood state oscillation are a cause of distress
15
and reduced quality of life in this group. This finding concurs with quantitative studies [39,
40]. In the present study, several patients directly attributed their emotional difficulties to
the occurrence of DS, or felt that DS at least exacerbated these problems. Furthermore,
the described episodes of excessive emotional expression seemed to occur when patients’
perceived ability to cope with their emotions had reached a limit (i.e. when ‘things had
gotten too much’). It may be informative to consider whether DS may serve a similar
function to these episodic losses in emotional control, as another response to stress or
negative affect reaching a threshold, as proposed by some authors [29].
It is particularly interesting that the above emotional difficulties were described alongside a
general tendency to exert excessive control over the experience and/or expression of
negative emotion. Phenomena described within this theme can accurately be summed up by
the two phrases ‘shutting down’ negative emotions and ‘putting on a brave face’. The
reported tendency towards inhibited experience of negative emotion could be
conceptualised as a dissociative mechanism (e.g. emotional constriction, depersonalisation),
in those patients who experienced this as relatively automatic and involuntary. For these
patients, this type of detachment response seemed to have developed into a habitual
tendency, similar to that seen in depersonalisation disorder, for example. The observed
pattern has also been reported quantitatively [40]. These tendencies could possibly have
developed in the context of early life stressors such as traumatic experiences, family
dysfunction and/or parental modelling of excessive emotional control and inhibition, as
suggested by patients’ reflections.
Some patients also avoided expressing genuine emotions to others, and/or referred to
displaying an overtly positive façade even when this was incongruent with their internal
16
emotional state. For some, this was a voluntary coping strategy, and seemed to represent
intentional cognitive avoidance of some emotions, linked to beliefs regarding the necessity
for complete independence, autonomy, personal control and ‘emotional strength’. These
general patterns accord with the quantitative findings [41], where patients with DS reported
exerting greater control over emotional expression and more negative beliefs about
emotions (e.g. shameful, irrational, useless), relative to healthy controls. Novakova et al.
[40] also observed significantly higher scores for self-reported emotion suppression and
avoidance in their sample of patients with DS, compared to non-clinical controls. Together,
the findings indicate the presence of maladaptive beliefs about emotional functioning,
alongside a tendency to avoid, inhibit, or ‘mask’ the experience/expression of negative affect.
Cognitive therapies for DS might seek to focus on such beliefs, and associated schemas.
The strong links between emotions and bodily experiences described by many patients also
suggested that negative affect was associated with an exaggerated focus on somatic
symptoms and experiences, in this sample. This is in line with the previous findings that
have shown high levels of somatic symptoms and somatoform dissociation in patients with
DS [12,42-45]. It seems, then, that difficult emotions may manifest as a variety of somatic
symptoms in individuals with this diagnosis. The specific mechanisms by which emotion may
give rise to somatoform symptoms is a fascinating and important area for further
neurobiological studies [46,47], but the currently available literature indicates possible
abnormalities in functioning and connectivity between neural regions involved in emotion,
agency, motor control and attention/awareness[48-51].
The themes pertaining to stressful and traumatic life events, once again, generally reflected
and extended the findings of previous studies [52,53]. The qualitative findings described
17
here confirm that patients with DS experience a wide range of adverse life events. Abuse
(physical, emotional, sexual) was disclosed by several patients, further suggesting the
aetiological importance of these types of experience in DS. Several patients described
‘locking these experiences away’ or suppressing them, which indicates that the trauma and
psychological consequences may not have been fully processed. Again, this shows
considerable insight into mechanisms that can be conceptualised as dissociative (i.e.
fractionation of autobiographical memories and emotions relating to traumatic life events).
These findings are suggestive of a complex and unresolved response to traumatic
experiences that may contribute significantly to the development of DS, and corresponds
with observations of high rates of post-traumatic stress disorder and associated symptoms
in this patient group [52]. These findings are also indicative of the potential importance of
identifying and addressing traumatic experiences in clinical interventions for some patients
with DS, perhaps utilising techniques aimed at emotional processing of the index trauma.
However, the currently available literature indicates that whilst trauma/abuse are significant
risk factors for the later development of DS, these experiences are reported by only a
proportion of patients with the diagnosis and so seem to represent just one of many life
events that might predispose towards the condition, in individuals with possible additional
cognitive and emotional vulnerabilities.
Relationship disturbances were also clearly present for many patients, particularly involving
problems with significant others that appeared longstanding and difficult to resolve. Family
and relationship dysfunction has been reported in this group in studies utilising other
methodologies [8,15,53-55]. Several patients described dysfunctional family dynamics in
childhood, and relationship crises occurred immediately prior to DS onset in several cases.
18
Therefore, significant relationship difficulties may act as predisposing, precipitating or
perpetuating factors for DS, and are suggestive of the possible benefits of including
significant others within psychological interventions for the disorder. Addressing current
relationship dysfunction might either take place within CBT protocols or other approaches
such as systemic family interventions or interpersonal psychotherapy However, it should be
noted that there is currently a paucity of controlled studies of the efficacy of the latter two
approaches in this population, so this is a potentially valuable avenue for further research.
Whilst many patients found it difficult to understand the processes by which stressors might
have brought about the initial onset of DS, some patients seemed to have a better
understanding of how emotional states might contribute to the ongoing occurrence of DS.
The theme of DS being a form of emotional release or ‘shut-down’ following a build-up of
emotion was reminiscent of those previously reported in other qualitative studies [17,20].
Together, this lends support to the proposal that DS are dissociative phenomena.
Hendrickson et al. [35,36] have also reported elevated dissociative experiences during
seizures in patients with DS. Moreover, Stone and Carson [56] report a series of DS cases
who described ‘wilful submission’ to seizure onset, akin to voluntarily dissociating from the
present situation or mental state.
The inconsistency with which DS were associated with particular emotional states indicates
that, if triggered by emotion, the relationship is not specific to any one emotional state. A
recent study [35], nevertheless, reported that peri-ictal emotions were more commonly
reported in DS patients than in those with ES. As many patients presently described DS
occurring during times of relative happiness or relaxation, it might be that the emotional
‘shut-down’ or ‘release’ does not necessarily occur in direct response to one emotional
19
episode, but might well occur after a gradual build-up, when the individual is in a ‘safer’
situation for the seizure to occur. It is also possible that seizures might be triggered by
emotions taking place at a preconscious level, triggered by previously neutral cues that have
been associated with trauma-related affect [28].
The lack of consistency between conscious emotion and seizure occurrence most likely
underlies the perceived unpredictability of the seizures and may make attempts at control
or prevention more difficult. Identifying possible preconscious triggers and/or patterns in
accumulating distress may well be beneficial in increasing patients’ ability to predict and/or
control the occurrence of their seizures. Patients who identify stress as a precipitant for
their seizures also report being better able to predict their seizures, relative to patients who
do not report stress as a precipitant [57].
The finding that patients generally described sensitivity to others’ emotional states was
noteworthy, in light of previous research. Patients reported being very much aware of and
responsive to others emotions and some described this as having a negative impact on their
functioning. This accords well with findings [31] that patients with DS show exaggerated
preconscious vigilance for outward signs of others’ emotional states (i.e. from facial
expressions). Moreover, other studies have indicated that experimentally presented facial
emotional expressions lead to higher levels of cognitive interference in patients with DS
compared to controls [33,58]. The findings described here suggest that at least some
patients are aware of this tendency and so it may not be operating entirely outside
conscious awareness.
20
Patients often referred to their resilient personality traits, which suggested that they
perceived themselves as proficient in coping with adversity. This seemed to be closely
associated to the high levels of control and independence preferred by these patients, and
the ability to exert high levels of regulation over their emotions. It is possible that an
exaggerated emphasis on being resilient in the face of adversity and maintaining a relatively
positive perspective may be crucially linked with the tendency to not tolerate the
experience or expression of negative affect. Therefore, these beliefs and expectations could
be an important mediator of the relationship between traumatic/stressful life events and the
development of somatoform/dissociative symptoms, including DS. Put simply, patients’
psychological resistance to processing and expressing trauma- or stress-related negative
affect (i.e. the belief that acknowledging negative affect or accepting support is a weakness)
could directly increase the tendency towards dissociation (psychological/somatoform) and
thus, the development of DS or other medically unexplained symptoms / functional
neurological symptoms.
The common reports of behavioural/social avoidance as a coping strategy indicated that
some patients manage their difficulties in ways that could be detrimental to their general
functioning. The excessive use of behavioural avoidance reported presently, for some,
included prolonged periods of self-imposed isolation, which would necessarily lead to
reduced socialisation, physical exercise, among other consequences. Once again, though,
these reports are in accordance with previous literature which has indicated a tendency
towards avoidant coping in this group [7,10,14,59]. These findings suggest that this is an
important area for clinical intervention, perhaps as one element within cognitive behavioural
approaches to treating the disorder [60].
21
Finally, the presence of protective factors (e.g. supportive relationships, education,
employment) seemed to limit the impact of DS for some patients. Indeed, findings have
previously shown that outcomes tend to be better for patients with DS who are in
employment [61], those with more years of education [62], and those who are accompanied
by a supportive other to their first clinic appointment [63]. It is possible that for patients out
of employment, with less education or fewer positive social contacts, social interventions
aimed at the development of occupational, educational and interpersonal skills might provide
considerable benefits.
4.1. Limitations
It is possible that some of the phenomena described here may not be specific to individuals
with DS and might be present in other clinical disorders. The current study aimed to
provide an in-depth phenomenological exploration of emotional processes in patients with
DS only; however, future studies may seek to explore differences and similarities between
patients with DS and other functional neurological disorders, for example. Another
comparison group might include those diagnosed with epilepsy, to examine whether such
individuals understand the role of emotions in their seizures differently to those with a
diagnosis of DS.
Furthermore, the current study aimed to identify themes that were common to most/all
patients in the sample, thereby representing patients with DS more generally. Additional
studies might provide comparisons of the perspectives of subgroups of patients with DS,
such as those with higher and lower educational achievement, varying levels of social
support, an absence versus presence of psychological trauma (e.g. abuse) and/or those with
chronic versus recent-onset DS.
22
As previously discussed, the key goal of this study was to explore patients’ understandings
of their emotional functioning, rather than to specifically assess causal relationships or
disorder-specific phenomena. The current study, therefore, utilised a narrative
phenomenological approach to exploring the role of emotions in DS, with the central
objective being to better understand patients’ unique subjective emotional experiences.
Whilst the study identified several factors that patients viewed as important sources of
distress and/or of possible relevance to the onset/occurrence of their seizures, the study did
not include manipulation of variables under controlled conditions, so it is important to note
that causal relationships between specific aetiological factors (e.g. somatoform symptoms,
trauma/abuse) and DS occurrence/diagnosis are not supported by the current study.
Instead, the findings here provide an indication as to which symptoms and life experiences
are perceived as most important from the patients’ perspective only. Quantitative studies
including experimental and/or between-group designs are better suited to the elucidation of
causal relationships.
Another possible limitation is that this study aimed to examine patients’ subjective
experiences of the links between emotions and DS. According to most theoretical models
of the disorder, the mechanism underlying this relationship is likely to occur below the level
of conscious awareness. Therefore, it could be argued that an attempt to examine patients’
conscious access to these processes is unlikely to be informative. However, the study has
shown that this sample of patients with DS were able to reflect on their general emotional
functioning and processing styles, which in itself provides important insights into possible
aetiological processes. Moreover, several patients were able to formulate a possible
mechanism by which their emotions might be linked to their DS, in the form of an
23
emotional release or shut-down. Therefore, it seems that at least some patients with DS
are able to demonstrate insight into a possible emotional mechanism underlying their
seizures.
It should be noted, however, that an important possible influence on patients’ responses in
this study was any formulation provided by the participants’ clinicians. All patients included
in the sample had received a diagnosis of DS, and are likely to have received verbal and/or
written explanations as to how the seizures might be related to psychological factors. In
addition, some patients may have been directed towards internet-based resources for
individuals with functional neurological symptoms. It is not possible to conclude, therefore,
that the views expressed by patients in this study had not been in some way influenced by
clinician’s or other experts’ theoretical viewpoints. Nevertheless, one of the exclusion
criteria for the study was having completed psychological interventions for DS. Therefore, it
can be assumed that none of the patients had experienced extensive therapeutic input that
focused on seizure- or emotion-related beliefs or processes.
It is also important to note that within IPA, the investigator actively interprets the data
provided by participants and as such, this interpretation may be in some ways biased by the
sociocultural and professional background of that investigator. Indeed, whilst efforts were
made to ‘bracket’ such influences when interpreting patients’ responses, bias cannot be
excluded. Nevertheless, every effort was made to ‘stay close to the data’ and avoid making
significant theoretical assumptions that were not consistently supported by patients’
statements.
5. Conclusions
24
Patients with DS appear to have considerable insight into their emotional functioning and
how their life events and emotional responses might relate to ongoing seizure occurrence.
Almost all patients taking part in this study could identify life events that may have
contributed towards the initial onset of DS, although understanding of the processes
underlying this relationship was limited. The findings indicated the experience of
considerable emotional distress and dysregulation that was often long-standing, but also
exacerbated by the development of DS. Despite these difficulties, patients were generally
aware of others’ emotions and needs, and invested effort in caring for and supporting
others.
However, there was a clear tendency for patients to place high value on emotional
resilience, control and independence, and to exert excessive levels of control over the
experience and expression of negative emotions. This excessive emotional control can be
conceptualised as dissociation (involuntary, automatic) or cognitive avoidance (intentional,
controlled) of negative affect and it could contribute to intermittent episodes of excessive
emotional dysregulation. Indeed, DS may represent a consequence of this unprocessed and
‘bottled up’ negative affect, allowing the individual to release or ‘shut-off’ from the resultant
emotional experience. Future research might seek to explore further some of these
hypotheses with experimental or self-report measures. The findings of the study have a
number of clinical implications, which if applied in practice, could allow interventions to
target specific emotion-related processes in this group (e.g. emotion regulation, maladaptive
emotion-related beliefs), in addition to seizure-related cognitions.
25
Appendix 1 – Semi-structured interview schedule




Can you describe to me, in general terms, what sort of a person you are emotionally?
Prompts:
- Do your emotions/feelings change much over time?
- Do you ever try to change your feelings?
- Would you say that you generally experience more positive or negative
emotions, or roughly the same amount of each?
- Do your emotions ever affect aspects of your life? (e.g. your relationships,
work/college)
- Do you find it easy to name or label what you are currently feeling?
How do you tend to respond when you are faced with an emotionally upsetting event or
situation?
Prompts:
- For example, if somebody does something to upset or anger you?
- Do you always know straight away when something has upset you?
- Do you experience any physical changes when you are upset emotionally?
- Do you tend to express your feelings?
- Do you find it easy to calm down, once you are upset?
How easy do you find it to understand other people’s emotional responses to things
(feelings)?
Prompts:
- Can you usually tell if somebody is upset, happy, sad, angry, etc?
- If someone is upset or angry, can you generally understand why they may feel
that way?
- Do you ever feel confused by other people’s reactions to things?
Do you feel that your emotions/feelings were involved when your seizures/attacks
started?
Prompts:
- If yes, can you give me any ideas about what sort of events or experiences were
most important in this?
If no, what are your views on the reasons for why you started to have your
seizures?

In your view, are emotions/stress involved in the fact that you are having your seizures?
Prompts:
- If so, can you describe how you think this may be happening?
- Do you feel that you have any control over this?
- If emotions and stress are not reasons why you have seizures, why do you think
that you are having seizures?

During, just before, or straight after your seizures, can you tell me if you regularly
experience any specific emotions (have any particular feelings)?
Prompts:
- E.g. joy, anger, or fear
- Do you experience a sudden shift in the strength of your feelings/emotions?

Do you think that Dissociative Seizures are related to emotions/stress in general?
Prompts:
-

E.g. in other people
Is there anything else that you would like to tell me about your emotions and feelings?
Particularly in relation to your diagnosis and experience of DS.
26
Acknowledgements
We wish to thank all patients who completed the study. The research was funded by a
postgraduate studentship awarded to SP from the Department of Psychology, Institute of
Psychiatry, Psychology and Neuroscience (King’s College London), and a grant from the
Central Research Fund (University of London). This paper also represents independent
research part-funded (LHG) by the National Institute for Health Research (NIHR)
Dementia Biomedical Research Unit at South London and Maudsley NHS Foundation Trust
and King’s College London. LHG and JDCM are in receipt of further funding from the NIHR.
The views expressed are those of the authors and not necessarily those of the NHS, the
NIHR or the Department of Health.
Conflict of interest: The authors have no conflict of interest to declare.
Supplementary information
Supplementary file 1 – Further details on data analysis
27
References
[1] WHO. World Health Organisation. The ICD-10 classification of mental and behavioural
disorders: Clinical descriptions and diagnostic guidelines. Geneva: Switzerland: World Health
Organisation; 1992.
[2] American Psychiatric Association. Diagnostic and statistical manual of mental disorders,
5th edn. (DSM-5). Washington: American Psychiatric Association.; 2013.
[3] Devinsky O, Gazzola D, LaFrance WC. Differentiating between nonepileptic and
epileptic seizures. Nat Rev Neurol 2011;7:210-20.
[4] Avbersek A, Sisodiya S. Does the primary literature provide support for clinical signs
used to distinguish psychogenic nonepileptic seizures from epileptic seizures? J Neurol
Neurosurg Psychiatry 2010;81:719-25.
[5] Duncan R, Oto M. Predictors of antecedent factors in psychogenic nonepileptic attacks:
Multivariate analysis. Neurology 2008;71:1000-5.
[6] Myers L, Perrine K, Lancman M, Fleming M, Lancman M. Psychological trauma in patients
with psychogenic nonepileptic seizures: Trauma characteristics and those who develop
PTSD. Epilepsy Behav 2013;28:121-6.
[7] Frances PL, Baker GA, Appleton PL. Stress and avoidance in pseudoseizures: Testing the
assumptions. Epilepsy Res 1999;34:241-9.
[8] Wood BL, McDaniel S, Burchfiel K, Erba G. Factors distinguishing families of patients
with psychogenic seizures from families of patients with epilepsy. Epilepsia 1998;39:432-7.
[9] Reuber M, Pukrop R, Bauer J, Derfuss R, Elger CE. Multidimensional assessment of
personality in patients with psychogenic non-epileptic seizures. J Neurol Neurosurg
Psychiatry 2004;75:743-8.
[10] Cronje G, Pretorius C. Coping styles and quality of life in patients with psychogenic
non-epileptic seizures (PNES): A south african perspective. Neurology 2013;80 (1
MeetingAbstracts.
[11] Reuber M, Fernandez G, Helmstaedter C, Qurishi A, Elger CE. Evidence of brain
abnormality in patients with psychogenic nonepileptic seizures. Epilepsy Behav 2002;3:24954.
[12] Lally N, Spence W, McCusker C, Craig J, Morrow J. Psychological processes and
histories associated with nonepileptic versus epileptic seizure presentations. Epilepsy Behav
2010;17:360-5.
[13] Reuber M, House AO, Pukrop R, Bauer J, Elger CE. Somatization, dissociation and
general psychopathology in patients with psychogenic non-epileptic seizures. Epilepsy Res
2003;57:159-67.
28
[14] Goldstein LH, Drew C, Mellers J, Mitchell-O'Malley S, Oakley DA. Dissociation,
hypnotizability, coping styles and health locus of control: Characteristics of pseudoseizure
patients. Seizure 2000;9:314-22.
[15] Salmon P, Al-Marzooqi SM, Baker G, Reilly J. Childhood family dysfunction and
associated abuse in patients with nonepileptic seizures: Towards a causal model. Psychosom
Med 2003;65:695-700.
[16] Willig C. Introducing qualitative research in psychology. Berkshire: McGraw-Hill
International; 2013.
[17] Carton S, Thompson PJ, Duncan JS. Non-epileptic seizures: Patients' understanding and
reaction to the diagnosis and impact on outcome. Seizure 2003;12:287-94.
[18] Karterud HN, Knizek BL, Nakken KO. Changing the diagnosis from epilepsy to PNES:
Patients' experiences and understanding of their new diagnosis. Seizure 2010;19:40-6.
[19] Thompson R, Isaac CL, Rowse G, Tooth CL, Reuber M. What is it like to receive a
diagnosis of nonepileptic seizures? Epilepsy Behav 2009;14:508-15.
[20] Wyatt C, Laraway A, Weatherhead S. The experience of adjusting to a diagnosis of
non-epileptic attack disorder (NEAD) and the subsequent process of psychological therapy.
Seizure 2014;23:799-807.
[21] McMillan KK, Pugh MJ, Hamid H, Salinsky, M, Pugh, J, Noel, PH et al. Providers'
perspectives on treating psychogenic nonepileptic seizures: Frustration and hope. Epilepsy
Behav 2014;37:276-81.
[22] Fairclough G, Fox J, Mercer G, Reuber M, Brown RJ. Understanding the perceived
treatment needs of patients with psychogenic nonepileptic seizures. Epilepsy Behav
2014;31:295-303.
[23] Quinn MC, Schofield MJ, Middleton W. Permission to speak: Therapists' understandings
of psychogenic nonepileptic seizures and their treatment. J Trauma Dissociation
2010;11:108-23.
[24] Baxter S, Mayor R, Baird W, Brown R, Cock H, Howlett S et al. Understanding patient
perceptions following a psycho-educational intervention for psychogenic non-epileptic
seizures. Epilepsy Behav 2012;23:487-93.
[25] Dickinson P, Looper KJ, Groleau D. Patients diagnosed with nonepileptic seizures:
Their perspectives and experiences. Epilepsy Behav 2011;20:454-61.
[26] Green A, Payne S, Barnitt R. Illness representations among people with non-epileptic
seizures attending a neuropsychiatry clinic: A qualitative study based on the self-regulation
model. Seizure 2004;13:331-9.
[27] Bowman ES, Markand ON. The contribution of life events to pseudoseizure occurrence
in adults. Bull Menninger Clin 1999;63:70-88.
29
[28] Goldstein LH, Mellers JDC. Ictal symptoms of anxiety, avoidance behaviour, and
dissociation in patients with dissociative seizures. J Neurol Neurosurg Psychiatry
2006;77:616-21.
[29] Baslet G. Psychogenic non-epileptic seizures: A model of their pathogenic mechanism.
Seizure 2011;20:1-13.
[30] Roberts NA, Reuber M. Alterations of consciousness in psychogenic nonepileptic
seizures: Emotion, emotion regulation and dissociation. Epilepsy Behav 2014;30:43-9.
[31] Bakvis P, Roelofs K, Kuyk J, Edelbroek PM, Swinkels WAM, Spinhoven P. Trauma,
stress, and preconscious threat processing in patients with psychogenic nonepileptic
seizures. Epilepsia 2009;50:1001-11.
[32] Bakvis P, Spinhoven P, Zitman FG, Roelofs K. Automatic avoidance tendencies in
patients with psychogenic non epileptic seizures. Seizure 2011;20:628-34.
[33] Gul A, Ahmad H. Cognitive deficits and emotion regulation strategies in patients with
psychogenic nonepileptic seizures: A task-switching study. Epilepsy Behav 2014;32:108-13.
[34] Roberts NA, Burleson MH, Weber DJ, Larson A, Sergeant K, Devine MJ et al. Emotion
in psychogenic nonepileptic seizures: Responses to affective pictures. Epilepsy Behav
2012;24:107-15.
[35] Hendrickson R, Popescu A, Ghearing G, Bagic A. Thoughts, emotions, and dissociative
features differentiate patients with epilepsy from patients with psychogenic nonepileptic
spells (PNESs). Epilepsy Behav 2015;51:158-62.
[36] Hendrickson R, Popescu A, Dixit R, Ghearing G, Bagic A. Panic attack symptoms
differentiate patients with epilepsy from those with psychogenic nonepileptic spells (PNES).
Epilepsy Behav 2014;37:210-4.
[37] Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA, editor.
Qualitative psychology: A practical guide to research methods. London: Sage; 2008. p. 53-80.
[38] Fiszman A, Kanner AM. Comorbidities in psychogenic nonepileptic seizures:
Depressive, anxiety, and personality disorders. In: Schachter SC, LaFrance WCJ, editors.
Gates and Rowan's nonepileptic seizures. 3rd ed. Cambridge, UK: Cambridge University
Press; 2010. p. 225-236.
[39] Al Marzooqi SM, Baker GA, Reilly J, Salmon P. The perceived health status of people
with psychologically derived non-epileptic attack disorder and epilepsy: A comparative study.
Seizure 2004;13:71-5.
[40] Novakova B, Howlett S, Baker R, Reuber M. Emotion processing and psychogenic nonepileptic seizures: A cross-sectional comparison of patients and healthy controls. Seizure
2015;29:4-10.
[41] Urbanek M, Harvey M, McGowan J, Agrawal N. Regulation of emotions in psychogenic
nonepileptic seizures. Epilepsy Behav 2014;37:110-5.
30
[42] Dimaro LV, Dawson DL, Roberts NA, Brown I, Moghaddam NG, Reuber M. Anxiety
and avoidance in psychogenic nonepileptic seizures: The role of implicit and explicit anxiety.
Epilepsy Behav 2014;33:77-86.
[43] Dixit R, Popescu A, Bagic A, Ghearing G, Hendrickson R. Medical comorbidities in
patients with psychogenic nonepileptic spells (PNES) referred for video-EEG monitoring.
Epilepsy Behav 2013;28:137-40.
[44] Elliott JO, Charyton C. Biopsychosocial predictors of psychogenic non-epileptic
seizures. Epilepsy Res 2014;108:1543-53.
[45] Brown RJ, Bouska JF, Frow A, Kirkby A, Baker GA, Kemps S et al. Emotional
dysregulation, alexithymia, and attachment in psychogenic nonepileptic seizures. Epilepsy
Behav 2013;29:178-83.
[46] Carson AJ, Brown R, David AS, Duncan R, Edwards MJ, Goldstein LH et al. Functional
(conversion) neurological symptoms: Research since the millennium. J Neurol Neurosurg
Psychiatry 2012;83:842-50.
[47] Spence SA. All in the mind? the neural correlates of unexplained physical symptoms.
Adv Psychiatr Treat 2006;12:349-58.
[48] Harvey SB, Stanton BR, David AS. Conversion disorder: Towards a neurobiological
understanding. Neuropsychiatr Dis Treat 2006;2:13-20.
[49] Nicholson TRJ, Kanaan RAA. Conversion disorder. Psychiatry 2009;8:164-9.
[50] Vuilleumier P. Brain circuits implicated in psychogenic paralysis in conversion disorders
and hypnosis. Clin Neurophysiol 2014;44:323-37.
[51] Perez DL, Dworetzky BA, Dickerson BC, Leung L, Cohn R, Baslet G et al. An
integrative neurocircuit perspective on psychogenic nonepileptic seizures and functional
movement disorders: Neural functional unawareness. Clin EEG Neurosci 2014.
[52] Fiszman A, Alves-Leon SV, Nunes RG, D‘Andrea I, Figueira I. Traumatic events and
posttraumatic stress disorder in patients with psychogenic nonepileptic seizures: A critical
review. Epilepsy Behav 2004;5:818-25.
[53] Binzer M, Stone J, Sharpe M. Recent onset pseudoseizures - clues to aetiology. Seizure
2004;13:146-55.
[54] Stone J, Sharpe M, Binzer M. Motor conversion symptoms and pseudoseizures: A
comparison of clinical characteristics. Psychosomatics 2004;45:492-9.
[55] Moore PM, Baker GA, Mcdade G, Chadwick D, Brown S. Epilepsy, pseudoseizures and
perceived family characteristics - a controlled-study. Epilepsy Res 1994;18:75-83.
[56] Stone J, Carson AJ. The unbearable lightheadedness of seizing: Wilful submission to
dissociative (non-epileptic) seizures. J Neurol Neurosurg Psychiatry 2013;84:822.
31
[57] Privitera M, Walters M, Lee I, Polak E, Fleck A, Schwieterman D et al. Characteristics
of people with self-reported stress-precipitated seizures. Epilepsy Behav 2014;41:74-7.
[58] Bakvis P, Spinhoven P, Putman P, Zitman FG, Roelofs K. The effect of stress induction
on working memory in patients with psychogenic nonepileptic seizures. Epilepsy Behav
2010;19:448-54.
[59] Myers L, Fleming M, Lancman M, Perrine K, Lancman M. Stress coping strategies in
patients with psychogenic non-epileptic seizures and how they relate to trauma symptoms,
alexithymia, anger and mood. Seizure 2013;22:634-9.
[60] Goldstein LH, Mellers JD, Landau S, Stone J, Carson A, Medford N et al. COgnitive
behavioural therapy vs standardised medical care for adults with dissociative non-epileptic
seizures (CODES): A multicentre randomised controlled trial protocol. BMC Neurol
2015;15:98.
[61] Duncan R, Razvi S, Mulhern S. Newly presenting psychogenic nonepileptic seizures:
Incidence, population characteristics, and early outcome from a prospective audit of a first
seizure clinic. Epilepsy Behav 2011;20:308-11.
[62] Reuber M, Pukrop R, Bauer J, Helmstaedter C, Tessendorf N, Elger CE. Outcome in
psychogenic nonepileptic seizures: 1 to 10-year follow-up in 164 patients. Ann Neurol
2003;53:305-11.
[63] Arain AM, Hamadani AM, Islam S, Abou-Khalil BW. Predictors of early seizure
remission after diagnosis of psychogenic nonepileptic seizures. Epilepsy Behav 2007;11:40912.
32
Table 1. Participant characteristics
Participa
nt
number
Ag
e
Gende Ethnic
r
backgrou
nd
(M/F)
Occupational
history
Educationa
l
backgroun
d
Time
since
DS
onset
(month
s)
1
40s
F
White
British
Selfemployed/homemake
r
GCSEs / O
levels
48
2
40s
F
White
British
Homemaker/professi
onal
Undergradua 84
te degree
3
50s
F
White
British
Homemaker
None
4
30s
M
White
British
Professional
Postgraduate 33
degree
5
30s
F
White
British
Administration
Undergradua 192
te degree
6
50s
F
Mixed
Professional
Postgraduate 84
degree
7
20s
F
Black
African
Professional
Postgraduate 84
degree
8
30s
F
White
British
Homemaker
GCSEs / O
levels
9
50s
F
White
British
Professional
Undergradua 44
te degree
10
30s
M
White
British
Intermediate
occupation
GCSEs
11
50s
M
White
British
Unemployed/disability None
276
12
30s
M
Mixed
Intermediate
occupation
Diploma
168
13
30s
M
White
British
Service occupation
None
192
14
20s
F
White
British
Unemployed/disability None
120
15
50s
F
White
Intermediate
30
GSCEs / O
120
120
15
33
British
occupation
levels
M = male; F = female
34
Table 2. Themes relating to general emotional functioning
Theme
Sub-theme
Typical statements
Negative affect
Current negative affect
related to somatic
symptoms (including DS)
1. “I get…especially since all my health issues started, I get very depressed, due to all the
things that are going on with me.” (P12)
Previous depression
related to difficult life
events / circumstances
Long-term lack of positive
affect
Affect dysregulation
‘Ups and downs’
2. “I used to be in huge emotional pain...my life was really hard emotionally...I went
through a very difficult time, I was depressed…” (P6)
3. “I wouldn’t say I’ve ever felt really happy…I wouldn’t say, for the past like 15 or 20
years, I’ve been happy, I can’t remember a time in my life...” (P7)
4. “My bad moods are...they’re really bad...When I’m in a bad mood, I’m really unhappy.
It’s severe. When I’m in a good mood...nothing can go wrong.” (P14)
5. “…before my attacks, I was quite wavy anyway....as opposed to a calm sea...but since
the attacks...my emotions have changed, are much more dramatic...the wavy lines are
much higher and much lower, at either end of the spectrum…” (P1)
Episodic excessive
6. “I kind of, blow up at inappropriate things at home. Well not inappropriate, but really
small things at home.” (P5)
35
emotional expression
Difficulties calming down
7. “You know, it comes out of me…in a sense where, I’ll smash a plate or a cup.” (P11)
8. “I’m not good at calming down. It takes me forever…when I hold things in, and think
what I’m saying, and I have to hold back a little bit, that’s when I can’t calm down.” (P8)
9. “Once I cross the line, then it’s avalanche...and I think that’s because I bottle it all
up…so, there is a line. The point of no return I suppose.” (P2)
Inhibited experience /
expression of negative
emotions
Shutting off difficult
emotions
10. “I have to accommodate certain negative influences, so I think they leave me flat,
rather than down. Numb. Shutting it off. Like, blocking it.” (P2)
11. “I very much compartmentalise stuff…with very strong emotions, be it very good ones
or very bad ones, I tend to close off from them... (P4)
Bottling-up emotions and
putting on a ‘brave face’
12. “Throughout my entire life and throughout any stresses and strains I’ve had, the way
I’ve always dealt with it, is – the worse I’m actually feeling, the happier I will be to people
around me. I hide my feelings very much so…I just, you know, put on this sort of happy
face...” (P15)
13. “But even my best friends, you know, they’ve come to see me, so I don’t have to be
completely, you know ‘painted smile’, but there’s still an element of that.” (P1)
14. “I think, one of the things about my family life, and my upbringing, was that very
strong emotions are not ok, and they’re not shown. Which I guess ties into the seizures in
some way.” (P4)
Inhibition of emotions
15. “I feel myself, it’s about how I was emotionally as a child…because I was very sensitive
36
rooted in development
and the problems that I faced, I suppressed that. I forget about that for many many years.
You know, it went out of my mind completely.” (P6)
16. “Sometimes...I want to hold things back...but I know, because of the seizures and
everything, I know that’s the worst thing you can do, to keep it all in to yourself. You’ve got
to speak to someone about it.” (P8)
Insights into links with
seizures / negative
consequences
Rumination / intrusive
thoughts
Emotions and physical
symptoms (non-DS)
17. “So it was all about carrying on, covering up, not being able to say anything.
Particularly in some very stressful situations…I know that was internalising the emotions,
and...I know how it affected me too.” (P2)
18. “I have to keep processing it. I keep processing it, over and over and over...it’s like a
little nag, and it won’t go away, no matter what I try to do, it won’t go away. It’s like I
have to keep thinking about it...” (P9)
Pain
19. “I’m always getting the pain…it’s just like all of the time, even for small things, if I get
angry or something like that....it’s just like very quick, and then I feel very tense....it can
take days before the pain goes....” (P7)
Motor symptoms
20. “I get these jerks, you know, and I recognise if I’m feeling a bit anxious, it’s like a buildup, and my body will jerk, and then the anxiety goes.” (P9)
Exhaustion
21. “...if something’s upset me…perhaps the day after, or the day after that, I will feel very
exhausted…and you know, if I allow myself time enough, then it will make me feel
physically not well...” (P15)
37
22. “If I’m upset I won’t sleep...and then when I do sleep I have really strange weird
dreams that are sort of connected to what I’m upset about...” (P5)
Sleep disturbance
23. “I mean night-times, there’s the night traumas, the nightmares, night sweats…there is
a connection with the nightmares with the bullying.” (P13)
24. “Sometimes I get hot, and I tend to, it’s sometimes like the anger is boiling up inside
me, and my heart races a bit, if it’s something really bad...If I get really angry, I shake,
which is quite embarrassing.” (P5)
Physiological responses to
affective arousal
P = participant number
38
Table 3. Themes relating to adverse life experiences
Themes
Sub-theme
Typical statements
Relationship /
interpersonal problems
Relationship dysfunction /
interpersonal problems
(current)
25. “I know for example that there is an ongoing situation with me, where conversations
are being misrepresented...and it feels terribly unjust and terribly unfair...and this has
gone on for several years.” (P2)
26. “I find it hard to actually make friendships. I mean I try and get out there, around
people, and I just can’t do it.” (P13)
Relationship dysfunction
(previous)
27. “…when my parents got divorced…it’s quite a wounding thing…you know, I was
very cross and very bitter, and I carried that for a long time.” (P1)
28. “…for the first five or maybe six years of my marriage, I cried constantly because it
was so awful…it just destroyed me….” (P15)
Abuse
Childhood abuse
29. “I think...when I was a child, I went through quite a bit of child abuse...and I think I
locked that away, and I know because I just got on with it...my way was to kind of get on
with it...I don’t think on it at all, sometimes I’m kind of, not angry, I’ll be upset that I had
to suffer that, and now it’s still affecting my adult life.” (P10)
30. “So, when she, when I was beaten, I hate her, I hate the pain, and I hate not being
able to express my pain, my physical pain, my emotional pain, I hate not being able to
cry, I thought that was, you know, pure cruelty.” (P6)
31. “...he’ll shout and he’ll scream, and throw things...last week I was making a drink and
I’d got the boiling kettle in my hand…and he just walked up behind me and pushed me.”
(P5)
Adulthood abuse
32. “…and then the intimidation started and the mental bullying started…and that was
it.” (P13)
39
Generally stressful
circumstances
Somatic symptoms and
concerns
33. “…currently my situation at the moment is quite stressful…” (P2)
34. “I’ve had so many things happen, to me, during my life…” (P1)
Pain
35. “Most days, I end up with a bad headache throughout the day…I’ve been to the
neurologists and I’ve told them about it, and I’ve had brain scans, and they’re just not
finding anything.” (P13)
36. “I have pain all the time. Like in my leg, it’s just like, all the time. Nobody can do
anything about that...” (P7)
37. “I don’t go more than probably three, three and a half hours a night...the mind’s
constantly active.” (P10)
Sleep disturbance
38. “Sleep, that’s the main thing at the moment....I keep waking up constantly, for no
reason, and sometimes you think it’s time to get up...and then I can’t get back to sleep
again.” (P8)
P = participant number
Table 4. Themes relating to the role of emotions in DS
Theme
Sub-theme
Typical statements
DS onset linked to
stressful / traumatic life
events
Medical/somatic crises
39. “…they followed a long period of intense physical pain. The pain came first, the
attacks came after.” (P2)
40. “I had to go into hospital for minor surgery, I had general anaesthetic, I came out
of the anaesthetic, and ended up staying in for a week...they hadn’t a clue what it
40
was, and it kind of all went from there...” (P1)
41. “I got sick, and I was told I had meningitis...and so, they started around then....”
(P5)
42. “In 2004 I had a major physical failure. I had the seizures, I had the stomach, I
had to have surgery, I had breast cysts, I had cysts on my uterus….” (P6)
43. “I’d been attacked, shortly before that…” (P5)
Physical/sexual assault
44. “I was ok-ish then. I just went out for that walk…got beaten up...it all stemmed
from there...” (P11)
45. “Prior to all that, I lost my wife, my daughter, er, I gave up the alcohol…yeah so I
was sort of, I’d had a few sad moments, bereavements, before the actual…erm, the
first seizure.” (P11)
Multiple stressors
46. “I had a lot going on...moving home, getting married, and all that sort of thing,
so...it was stressful, at that time.” (P8)
47. “For me, they came at a time when my body was under a huge amount of strain
from stress, and also I ran the marathon...my relationship broke down in the March, I
ran the (marathon) in the April, and I was scheduled for the surgery in
June...physically, there was a lot of stuff going on…”(P4)
48. “I can remember my first day, my first seizure started…the problem I was facing
at home had just got to a point where I just couldn’t deal with it any more…I got to
my limit…something had to give, and for me, it obviously manifested in a seizure.”
41
(P15)
Relationship crises
DS as emotional ‘relief’
or ‘shut-down’
DS related to switching off from
emotions
DS originally triggered by a
build-up of emotion/stress
49. “So it would seem like to have a seizure would take me out of my surrounding
problems…Switched off, emotionally switched off, I don’t feel anything…I don’t feel
unhappy or I don’t feel happy, I just feel as though somebody has literally switched me
off and I’m not worried about anything.” (P15)
50. “…if you don’t get things off your chest, and you’re holding certain things back,
that keeps running round in your mind, then that is like stressing you out, then it’s
building up and making you more and more agitated, and I think that’s possibly one
of the causes that triggered it off.” (P8)
51. “I used to feel exhausted (after a seizure), but it was almost like all that fear had
gone, almost like a relief feeling, funnily enough, that it had gone.” (P9)
Relief after DS
Inconsistent
relationship between
emotional triggers and
DS occurrence
52. “At times when I’m stressed and fairly anxious I can have lots of seizures, but
then at the same time I can have none at all...” (P12)
53. “...before, I’d always feel like fear. I was just like really scared...now, I just feel like
every kind of big emotion, just triggers it, that’s the thing.” (P7)
42
Post-seizure
emotions /
experiences
Frustration
54. “So…they bring on a completely different emotion of ‘Oh god, it’s happened
again’ and ‘I haven’t done this and I haven’t done that’…there can be a feeling of
that, after one, which is ‘Oh god, here we go, another day lost, another day wasted.”
(P2)
55. “I feel very very tired, and sort of like, more worn out, then I was before…” (P11)
Tiredness / exhaustion
Weeping
56. “When I come out of it, all I want to do is cry, and that’s it...I’m always crying
after them, I’m just not myself, if you know what I mean?” (P14)
P = participant number
Table 5. Themes about relating to others
Theme
Sub-themes
Typical statements
Interpersonal
sensitivity
Interpersonal sensitivity as
positive
57. “I’m very sensitive to other people’s feelings, and I have a lot of empathy.” (P6)
Interpersonal sensitivity as
negative
58. “I’m going back to what I said about being sensitive to people, I just wish I didn’t
do that, I just wish I didn’t understand it so well. Because sometimes, you just don’t
want to know...” (P2)
59. “I remember when I was younger…I was very susceptible to other people’s
emotions…I think having a fairly volatile home-life makes you that way. You’re
consciously looking out for stuff.” (P4)
43
Caring for and
supporting others
60. “I’ve never had no-one look after me, I’ve always looked after other people….but
it’s not like that now.” (P3)
61. “I think I have this thing where...in work...most people will come to me...I’m like an
agony aunt. Which is ironic…” (P7)
Fear of burdening
others
62. “I don’t want to burden anybody else with it…I don’t want to burden anybody else
with what I’ve been feeling.” (P3)
63. “I tend to refuse people’s help, I tend to not want to take anything.” (P2)
P = participant number
Table 6. Themes relating to resilience, protective factors and coping
Theme
Sub-theme
Typical statements
Resilience
Emotional strength
64. “I had to toughen up, to be strong…so I was a fighter, I fight for things that I
want...” (P6)
65. “I’ve always been able to cope with everything… because if you don’t help
yourself, nobody will help you…” (P3)
Positivity
66. “I think I’m quite a positive person. I always look, I look positively on anything, I
try to be optimistic, no matter what comes my way…” (P15)
67. “I’ve always been more of a glass half full than glass half empty person....” (P9)
Control
68. “…I was, I did everything. I was in charge and that was it, full stop. But now,
I’ve lost it, I just haven’t got the confidence I had...With the seizures, since I’ve been
having these turns...I was always independent, always. But I’ve lost it…I can’t cope
44
with this, because it’s not me, I’m not in control, and I don’t like that.” (P3)
Protective factors
Supportive relationships
Educational/occupational
achievements
Work
Coping strategies
Distraction and relaxation
69. “I know, even on my worst days, that fundamentally I am actually really lucky,
and I’m actually very happy…I know that I’m lucky with my lot, and everything I’ve
got in my world, my family, my friends, and everything...” (P1)
70. “I did excellently at school, I made sure I did excellently at college, I did
excellently in jobs...” (P2)
71. “…sometimes I just think ok yeah, stop complaining...you can have a job, some
people don’t have jobs, they don’t have qualifications, or they are very sick and
things like that.” (P7)
72. “...it’s the one place that I always feel that I can be myself, but even if I don’t
feel well, if I go into (work), then I immediately feel well, because it’s like a feel-good
factor.” (P15)
73. “I’ve had to sort of force myself to get out of the depressions and try to find
things to do to take my mind off it....anything to take my mind off it.” (P12)
74. “I might go over the beach for a while…that’s nice, it helps, it don’t get me
completely calm, but it’s a nice relaxing atmosphere and that’s what I try and do, I
try and put myself in a situation where I go and do something relaxing, and try and
calm down.” (P13)
75. “...when I was young I did a lot of martial arts, so I learned how to do meditation
and breathing exercises and things, and I use them now.” (P12)
76. “So I kind of withdraw, I don’t phone call, I don’t pick up my phone, I don’t go
out, I just stay in my room...it can go on for days…I tend to...shut down.” (P7)
45
77. “...sometimes I have a tendency to shut down. You know, erm, switch off….you
know, me mobile phone, and not answer the door….I mean, shut off from society,
you know, where I won’t come out, you know I’ll I stay in…this is how I find my way
Behavioural / social avoidance of dealing with it.” (P11)
(‘shutting down’)
P = participant number
46
47