Abstract
Psychogenic nonepileptic seizures (PNES) superficially resemble epileptic seizures but are not associated with epileptic discharges in the brain. Instead, these episodes, which tend to occur with alterations in consciousness and body movements, are thought to be the result of mechanisms of conversion and dissociation. Psychological trauma and PTSD are very prevalent among patients with PNES. PNES can be conceived of as an extreme avoidance mechanism that serves the function of modulating distress and, in some cases, eliminating the precipitant stressor. Avoidance is also an essential component of PTSD. In patients who carry a dual diagnosis of PNES and PTSD, it is sensible that an empirically validated treatment for PTSD such as prolonged exposure (PE) therapy which targets avoidance by promoting exposure might be a useful approach to treat these patients. In this report, we present the case of a 52-year-old male with a 7-year history of PNES. His seizures, which were characterized by intense body shaking and loud guttural outbursts, were occurring up to 15 times per day. Because of these symptoms, he lost his employment and was ostracized by his family. Upon completion of a course of intensive outpatient PE, he achieved full remission of all psychogenic symptoms. Except for three brief seizures, he has maintained his health for 2 years. This constitutes the first detailed report of PE therapy used to effectively treat comorbid PNES and posttraumatic stress symptoms.
Keywords
1 Theoretical and Research Basis for Treatment
Psychogenic nonepileptic seizures (PNES) are manifested by a sudden change in behavior, perception, thinking, or sensation that closely resemble an epileptic seizure but are not accompanied by the characteristic electroencephalographic (EEG) changes that occur with an epileptic seizure.
Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013) classifies PNES as a subtype of conversion disorder or functional neurological symptom disorder (FNSD). Conversion is conceptualized by some as a “somatoform” subtype of dissociation and is thought to be due to psychological distress that is processed at a preattentive level remaining outside of awareness and instead diverted into a neurological (cognitive and motor) deficit (Baslet, 2011). However, PTSD might be the more appropriate diagnosis rather than conversion disorder if “new onset of somatic symptoms occurs within the context of posttraumatic distress” (American Psychiatric Association, 2013).
Autonomic arousal is often present before, during, or after many PNES episodes, but patients frequently do not report fear and/or distress (Brown & Reuber, 2016). This may be partly due to the tendencies toward alexithymia observed in PNES (Myers, Matzner, Lancman, Perrine, & Lancman, 2013). Nijenhuis (2009) offers a phenomenological categorization of dissociative symptoms that includes “psychoform dissociation” (i.e., disruption of the normal integrative functions of consciousness, memory, identity, and perception of the environment) and “somatoform dissociation” (motor control and sensory function). Somatoform and psychoform dissociation also tend to present at similar rates in patients diagnosed with conversion and dissociative disorders (Espirito-Santo & Pio-Abreu, 2009). This suggests that there is a similar underlying psychopathological mechanism that involves a disruption in integrative capacity in conversion and dissociative disorders.
A high prevalence of trauma and PTSD in patients with PNES has been consistently reported. In their review of 32 empirical studies, Sharpe and Faye (2006) reported that approximately 33.2% and 29.9% of PNES patients had experienced childhood sexual abuse or physical abuse, respectively, both of which were higher than control groups. There are also reports that emotional abuse and neglect are more common among patients diagnosed with PNES than in control groups of patients with epilepsy (Myers, Perrine, Lancman, Fleming, & Lancman, 2013). The percentage of patients with PNES who have been found to exhibit PTSD features ranges from 22% to 100% (Fiszman, Alves-Leon, Nunes, D’Andrea, & Figueira, 2004). History of prior sexual abuse has been associated with the onset of PNES at a younger age, more severe events (e.g., full body involvement, intense thrashing), and longer time span before the accurate diagnosis of PNES is made (Selkirk, Duncan, Oto, & Pelosi, 2008).
In PNES, a higher level of avoidance behaviors has been reported compared with epilepsy patients (Goldstein & Mellers, 2006). Treatments utilizing a cognitive-behavioral therapy (CBT) approach have been developed for some conversion disorders, such as PNES and psychogenic movement disorder (Goldstein et al., 2010; LaFrance et al., 2014; LaFrance & Friedman, 2009; LaFrance et al., 2009). These have provided preliminary support for the efficacy of CBT in reducing frequency of PNES episodes compared with standard medical care. For example, Goldstein et al. (2010) found that 12 sessions of CBT focusing on reducing avoidance, promoting relaxation, and challenging seizure-related cognitions resulted in greater posttreatment reduction in seizure frequency compared with standard medical care. Similarly, LaFrance et al. (2014) found that 12 sessions of CBT focusing on mood–cognition–environment connections, relaxation techniques, healthy communication, and identification of internal and external triggers led to significant seizure reduction over the course of treatment. In addition, these CBT-focused approaches were associated with significant improvements in mood, anxiety, quality of life, and global functioning (Goldstein, Deale, O’Malley, Toone, & Mellers, 2004; LaFrance et al., 2009). These studies are the first to systematically evaluate intervention for this type of conversion disorder, though they are limited by small sample sizes and lack of long-term follow-up. While the CBT treatments reviewed above target seizure-related cognitions and emotional responses, none explicitly target trauma and PTSD symptomatology in patients with PNES. To date, only one clinical series has examined treatment that explicitly targeted posttraumatic symptomatology in the treatment of PNES and PTSD (Myers, Vaidya-Mathur, & Lancman, 2017). Mindfulness-based treatments are also showing promise (Baslet & Hill, 2011).
As mentioned before, traumatic lifetime experiences and PTSD symptoms are commonly reported by adult PNES patients (Alper, Devinsky, Perrine, Vazquez, & Luciano, 1993; Myers, Perrine, et al., 2013), suggesting a possible link between the two pathologies. Prolonged exposure (PE) is an evidence-based cognitive-behavioral treatment for PTSD delivered in eight to 15, 90-min sessions (Foa, Hembree, & Rothbaum, 2007). The treatment is designed to help patients emotionally process past traumatic experiences by confronting trauma-related memories and situations in a safe context. PE is based on emotional processing theory (Foa & Kozak, 1986), which posits that natural recovery from trauma is impeded by avoidance behaviors. Avoidance is one of the core symptoms required for a diagnosis of PTSD (American Psychiatric Association, 2013) and is a common-sense solution used to decrease the distress associated with traumatic memories and related cues. However, in the long run, avoidance behaviors block opportunities for new learning, and thereby prevent patients with PTSD from modifying common erroneous beliefs about the self and the world, for example, the belief that one is likely to be hurt at any time, or that one cannot handle his or her emotions. To promote recovery from trauma, PE consists of two principle components: (a) repeated revisiting and recounting aloud the most upsetting trauma memory in session (imaginal exposure), followed by discussion with the therapist, and (b) repeated, between-session practice approaching situations or activities that are avoided because they have been associated with the trauma, but that are in fact objectively safe. In addition, early treatment sessions (1-3) feature psychoeducation about treatment and common reactions to trauma, and the introduction of a brief breathing retraining exercise aimed to reduce chronic tension and anxiety.
The efficacy of PE has been demonstrated in more than 29 randomized controlled trials. Indeed, PE has accrued more empirical support than any other treatment for PTSD, and is recommended as a front-line therapy in PTSD treatment guidelines published by the American Psychological Association, National Institute of Clinical Excellence, and Institute of Medicine. Across numerous clinical settings and a wide range of trauma types, PE has been shown to produce large reductions in PTSD symptoms and associated psychopathology, including depression (Powers, Halpern, Ferenschak, Gillihan, & Foa, 2010), anger (Orth, Cahill, Foa, & Maercker, 2008), anxiety sensitivity (Feske, 2008), dissociation, guilt (Resick, Nishith, Weaver, Astin, & Feuer, 2002), and interpersonal problems (Markowitz et al., 2015). The positive effects of PE are sustained over long-term follow-ups and have been demonstrated when the treatment is implemented both by expert CBT therapists and trained clinicians previously unfamiliar with CBT (McLean & Foa, 2011).
Over the past decade, research has increasingly tested whether PE is safe and effective for patients who present to treatment with PTSD and comorbid disorders. Randomized controlled trials have been conducted evaluating PE among patients with PTSD and psychosis (Van den Berg et al., 2015), borderline personality disorder (Harned, Korslund, & Linehan, 2014), substance use disorders (Brady, Dansky, Back, Foa, & Carroll, 2001; Foa, McLean, Capaldi, & Rosenfield, 2013), major depressive disorder (Hagenaars, van Minnen, & Hoogduin, 2010), and mild traumatic brain injury (Sripada et al., 2013). As either a stand-alone treatment or as part of a concurrent treatment program, PE has been shown to reduce PTSD symptoms in these comorbid populations without exacerbating symptoms of the co-occurring disorder. Patients with comorbid PTSD and psychosis treated with PE, for example, did not show increases in psychotic symptoms and achieved significant reductions in PTSD (Van den Berg et al., 2015). For patients with borderline personality disorder, suicidal behavior, and who met criteria for PTSD and who could recall at least a part of the index trauma, providing PE in the context of dialectical behavior therapy (DBT-PE) greatly improved remission rates from PTSD and, importantly, resulted in lower rates of suicidal and self-harm behavior at posttreatment than DBT-alone (Harned et al., 2014). These findings highlight the potential for utilizing PE in other comorbid populations, and suggest that PE is both safe and effective in reducing PTSD symptoms despite varied comorbidities. Moreover, some evidence suggests that with certain populations, effective treatment of PTSD symptoms may produce reductions in comorbid pathology.
2 Case Introduction
Ralph self-referred to our PNES Diagnostic and Treatment Program after learning about it in a PNES Facebook community support page. He resided in another state and needed to relocate temporarily for treatment. He discussed this option with his psychiatrist, and after receiving encouragement from this end, Ralph set in motion the necessary arrangements to travel out of state.
When younger, Ralph had earned a bachelor’s degree, had worked full-time for many years in the entertainment industry, and had had his own business. With the onset of seizures, it became impossible for him to continue working in this capacity so he transitioned to a retail position. However, once the seizures and psychogenic movements became daily, he was forced to leave this job too. When he was evaluated at our center, he was receiving disability benefits and was living in a facility for disabled persons. He rarely left home other than participating in some church activities. Ralph denied using illicit substances. He admitted to drinking a glass of red wine per night (6 oz); this had been his routine for over a decade. He never appeared intoxicated in session even though he had an early morning appointment and denied any past treatment for substance abuse.
He reported a medical history notable for celiac disease, chronic neck/back pain, torn ligaments in one knee, prediabetes, one mild traumatic brain injury in 1986 due to a motor vehicle accident, and a 15-year dystonic tic disorder that 7 years ago evolved into a combination of psychogenic seizure disorder and tic disorder. His psychiatric history included diagnoses of a somatoform disorder made in the 1970s, and depression and PTSD diagnosed in the 1980s. He had been in psychiatric and psychotherapeutic treatment almost continuously for the past 25 years. Despite this treatment, over the last 7 years his seizures had persisted unchanged and over the past year had increased in frequency to 15 times per day.
3 Presenting Complaints
During his initial outpatient evaluation, Ralph’s prominent presenting problem was daily psychogenic seizures that involved intense body shaking and yelling lasting approximately 20 min as well as a nearly continuous psychogenic movement disorder involving neck and arm twitches and loud guttural outbursts. Ralph reported two traumatic (sexual abuse) incidents in his lifetime and endorsed numerous symptoms consistent with a PTSD diagnosis. Specifically, Ralph described roughly two intrusive memories of his abuse per week, and intense psychological and physiological reactions to trauma reminders. He disclosed that as an adult he had never been able to engage in sexual activity with a partner because of “intense discomfort” felt in a physical/sexual setting. In addition, news stories involving bullying or sexual abuse resulted in emotional distress and could trigger twitching or even a seizure. To cope with these symptoms, Ralph was making recurrent efforts to avoid thinking about what happened to him, as well as efforts to avoid situations, people, and places that reminded him of his trauma (e.g., avoiding Facebook acquaintances from childhood and the town where he had grown up as a child). He reported symptoms of hyperarousal, a sense of nearly constant tension and perceived need to check behind himself for possible harm. As a result, crowded places were extremely difficult to tolerate and avoided when possible. He felt depressed and irritable, had become increasingly isolated, and was feeling very unhappy with what he identified as his inability to function normally. His independence has been significantly affected by a driving prohibition related to his seizures since 2011. He was also concerned about memory (forgetting conversations, posts made on Facebook, misplacing belongings) and concentration problems (e.g., zoning out while watching movies and finding it hard to follow plots) that appeared to be worsening over the last 4 to 5 years.
In addition to PTSD symptoms, Ralph reported a decades-long history of depression including dysphoric mood, disinterest in activities he had enjoyed in his youth, social isolation, and passive suicidal ideation with no intent. He especially emphasized that in the last year he had begun to feel hopeless about ever being cured of his seizures and that coming to New York City (NYC) was a “last-ditch effort.” Many negative interactions with medical professionals in emergency rooms over recent years contributed to serious doubts about how helpful the health system could be in remedying his situation. He shared that he felt very tired of bouncing around from one professional to another and worsening rather than improving, but he was willing to try our treatment program because we are a national referral site for PNES and had been recommended to him by the founder of the FND (functional neurological disorder) Hope Foundation, a foundation that supports persons with conversion disorders.
4 History
4.1 Trauma History and Symptom Onset
Ralph described two incidents of sexual molestation (ages 5 and 12). The first had been perpetrated by a gang of boys who were about 7 years older than him, and the second had been perpetrated by an authority figure in an after-school activity. In addition, he described his childhood as “extremely difficult” due to his mother’s “narcissistic, depressed, and angry” characteristics. She passed away a few years prior to his appointment in NYC.
He had been forced to stop working because of the severity of his psychogenic symptoms and moved in with his parents. However, after a year, his parents asked him to move out because they had become frustrated with this disorder and his lack of improvement. He moved in with a relative, but a few months later, he was again asked to leave and became homeless. At that time, Ralph became suicidal and voluntarily checked himself into a psychiatric facility. When discharged from the hospital, he moved into a homeless shelter where he contracted bed bugs, became ill due to food allergies, and was threatened with violence on more than one occasion by other residents. Per his report, he avoided sleeping for weeks to ensure his safety. At the time Ralph learned about the PNES program in NYC, he had been transferred to a housing institution for disabled individuals. His mental health treatment included weekly supportive counseling with a therapist and medication management with a psychiatrist once every 3 months. His medications at the time he was being evaluated included Klonopin 1 mg b.i.d., risperidone 0.25 mg q.d., Prozac 40 mg q.d., Lamictal 150 mg q.d., and metformin 500 mg q.d.
4.2 Pretreatment Process
Prior to initiating treatment, Ralph underwent inpatient testing (video-EEG [V-EEG] monitoring) and neuropsychological testing to confirm PNES and rule out epilepsy. Two days after discharge, he was seen for an initial psychological assessment session lasting 2 hr. Subsequently, he returned to his home state to begin preparing for a 5-week stay in NYC. Preparations included fundraising to pay for housing and travel expenses. Two months after his initial diagnostic interview, he returned to NYC to begin PE. Treatment was delivered in 90-min appointments, 3 times per week, for a total of 14 sessions in 5 weeks.
4.3 Outpatient Treatment Course
In session 1, Ralph and the therapist went over the rationale for PE and a breathing retraining exercise. The manualized trauma interview was conducted with PNES-specific modifications (e.g., questions regarding seizure frequency, semiology, duration, and plan for appropriate therapist response to seizure during session). In session 2, Ralph and his therapist had an in-depth discussion about common reactions to trauma including psychogenic seizures as an extreme avoidance behavior. In addition, the rationale for in vivo exercises and a first draft of an in vivo hierarchy was constructed. In session 3, the rationale for imaginal exposure, initiation of imaginal exposure exercise, and processing was completed. In Sessions 4 to 11, Ralph engaged in imaginal exposure for 30 to 45 min and processing; his progress with the in vivo exposure exercises was tracked. In Sessions 12 to 14, imaginal exposure was further circumscribed to hotspots, final entire imaginal exposure was completed, progress was reviewed, and relapse prevention was provided.
5 Assessment
5.1 Initial Inpatient Evaluation
Inpatient V-EEG testing took place over 4 days and confirmed a diagnosis of PNES with more than 20 PNES episodes captured. Ralph’s episodes were varied including (a) side-to-side jaw movements; (b) rapid and prolonged head jerks with changing directions from side to side to up and down; (c) rapid blinking that preceded repetitive facial grimacing; (d) dystonic contortions of his face; (e) hand spasms, sometimes progressing to shaking; (f) body stiffening; and (g) violent shaking followed by facial and body dystonic movements and grunting/coughing.
Ralph’s intellectual functioning (Wechsler Abbreviated Scales of Intelligence) was in the average range. Attention and processing speed as well as executive functions were within normal limits. Apart from confrontation naming, language functions were intact as was verbal memory. Visual memory testing was discontinued due to a seizure. His scores were in the extremely low range for his dominant and nondominant hands on a measure of fine motor speed and coordination. On a measure of sustained effort, his score did not suggest that he was malingering.
5.2 Self-Report Measures
When first assessed, his score on the Posttraumatic Stress Diagnostic Scale (PDS-5) indicated PTSD in the severe range. His score on the Beck Depression Inventory (BDI) was at a moderate range. On the Quality of Life in Epilepsy–31 (Vickrey et al., 1993), a self-report measure of quality of life associated with seizures, Ralph’s responses indicated significant reductions in quality of life, with elevated concerns regarding seizures, emotional well-being, cognitive functions, and social functions. On a measure that assesses ways in which the respondent tends to respond to stressful situations (Endler & Parker, 1999), Ralph indicated that he tended to cope mostly with emotionally based behaviors (e.g., get tense, get upset, blame myself) rather than task-oriented ones. On a measure that assesses the presence of trauma symptoms (Briere, 2011), Ralph’s profile was valid. A significant elevation was observed on the Posttraumatic Stress factor as well as on the Somatization factor. Ralph’s Minnesota Multiphasic Personality Inventory–2, Restructured Form (MMPI-2-RF; Tellegen, Ben-Porath, 2008) protocol was significant for possible overreporting of somatic and/or cognitive symptoms. A significant elevation was also observed on the RCd (demoralization) scale which suggested feelings of sadness and dissatisfaction with current life circumstances as well as on the RC1 scale (Somatic Complaints) with the patient reporting multiple somatic complaints including general malaise, gastrointestinal pain, and neurological symptoms (Table 1).
Pre- and Posttreatment Psychometric Scores.
Note. PDS-5 = Posttraumatic Stress Diagnostic Scale; BDI-II = Beck Depression Inventory–2; FSIQ = Full-Scale Intelligence Quotient; QOL = Quality of Life Inventor; CISS = Coping Inventory for Stressful Situations; TSI-2 = Trauma Symptom Inventory–2; MMPI-2RF = Minnesota Multiphasic Personality Inventory–2, Restructured Form; MMPI-2RF FBS-r = symptom validity; MMPI-2RF RCd = Demoralization; MMPI-2RF RC1 = Somatic Complaints.
6 Case Conceptualization
Ralph’s traumatic experience at the age of 5 involved an overwhelming experience of threat and humiliation from which he could not escape and could not fight. Instead, he recalls freezing, stiffening his body, and “leaving the room in his mind.” It is hypothesized that once this profoundly traumatic event disrupted his mind’s integrative capacity, the path was paved for dissociative and somatic responses and activated associated dissociative symptoms (i.e., PNES) when he encountered other distressing events of different magnitudes. His psychogenic episodes manifested when his depression had worsened as had his tics. He was forced out of his career, moved in with his parents, and took a low-level retail job. His seizures were a combination of cognitive dissociation and physical immobility at times and intense thrashing at others, and represented an evolution over the past decades from less dramatic symptoms but visibly resembled his behavior during the rape.
The DSM-5 (American Psychiatric Association, 2013) defines a dissociative subtype of PTSD recognizing patients who exhibit additional depersonalization and derealization symptoms (Friedman, Resick, Bryant, & Brewin, 2011; Lanius, Brand, Vermetten, Frewen, & Spiegel, 2012). When a threat cannot be dealt with through the flight-or-fight fear responses, it may instead prompt an activation of immobility and dissociative responses as survival options (Bracha, 2004; Galliano, Noble, Travis, & Puechl, 1993). Ralph was feeling trapped on many levels when the episodes started. With regard to PNES, Baslet (2011) has suggested that although clinical manifestations in conversion and dissociative disorders might involve different functional systems (i.e., sensory function, motor function in conversion versus memory, and identity in dissociation), there is a similar underlying psychopathological mechanism that involves a disruption in integrative capacity in conversion and dissociative disorders.
Baslet (2011) further submitted that PNES may represent the activation of hard-wired, behavioral tendencies that are similar to defensive responses such as “freezing.” This ongoing disruption of integrated cognitive processes could play a key role in the development and maintenance of both PTSD and PNES.
Dissociation is considered a major underlying mechanism in the development of PNES which occurs with the disruption of the normal, subjective integration of one or more aspects of psychological or cognitive functioning. Ralph was conceptualized as a patient whose early trauma primed a vulnerability toward dissociative reactions that were later manifested in the dual diagnoses of PNES and PTSD. Beliefs regarding his weaknesses and inability to overcome his many symptoms and a profound sense that most of the people in his life were uncaring and unhelpful maintained his symptoms. His seizures strengthened these beliefs by increasing his avoidance of others and worsening his feelings of hopeless and incompetence. They fostered an increasing marginalization from his peers and health professionals.
7 Course of Treatment and Assessment of Progress
Ralph’s initial consultation took place 2 days after he was discharged from the hospital with a confirmed diagnosis of PNES. The session was spent discussing the etiology of his psychogenic events, the history of the development of his symptoms, prior treatment attempts and their results, as well as how the symptoms had progressively encroached on his daily life and interpersonal relations. He expressed a strong desire to recover so that he could return to his career in the entertainment industry and leave his “disabled” status. He denied suicidal ideation or plan but shared that this treatment option in NYC probably represented his “last option.”
His traumatic history was discussed in greater detail, and it was explained to him that he met criteria for a diagnosis of PTSD. The connection between trauma, PTSD, and psychogenic seizures was also discussed. The final portion of the session was spent going over the concrete details of treatment with PE for PTSD and answering his questions. He was provided with a patient guide on PE to learn more about the treatment. He then traveled back to his home state to consult with social services and organize himself financially and logistically.
Ralph updated the NYC PNES program over the next few weeks: He managed to obtain some financial help from social services and set up an online fundraising page to fund his trip. Then, he obtained a reasonably priced apartment in a neighboring state that would require 1 hr to travel to the PNES center.
7.1 Pre–PE Orientation Session
The first portion of the session was spent going over logistics: what his living arrangements and travel into the office were like. He was also provided with a letter to carry on his person in the event of an emergency: This letter contained his therapist’s contact information, an explanation of his condition, and guidelines for how best to respond (e.g., unless the seizure has resulted in a physical injury, there is no need to call 911, the patient should return to baseline in 10 min). His most recent seizure had been 2 days prior to this first appointment. Facial and vocal tics and dystonic movements that had not evolved into full-blown seizures had been occurring daily. The remainder of the session was spent providing an explanation of PE treatment, and he was assigned to read the first three chapters from Reclaiming Your Life From a Traumatic Experience workbook (Rothbaum, Foa, & Hembree, 2007).
In addition, he was asked to carry a notebook with him in which he would record his seizures with time and date as well as noting thoughts and feelings prior to and following the conclusion of the episode. It was explained that this “seizure log” would be used to delineate triggers and the context of each episode. Last, he was provided with an explanation of grounding techniques to avoid dissociation and given an ice pack and small pebble to hold and concentrate on if he felt an aura of a seizure. His next appointment was in 2 days.
7.2 PE Session 1
When Ralph came in for his first session of PE, he reported that he had read the assigned chapters and had been keeping the seizure log. His compliance with the homework was praised to promote these ongoing efforts. During this session, the first part of the hour was spent conducting the standardized trauma interview described in the PE manual, which consisted of reviewing the details of Ralph’s traumatic experiences and how they have been affected him. He also identified as his index trauma (i.e., the trauma memory that is most disturbing and haunting to him) the rape perpetrated by three older boys that occurred when he was 5 years old. The overall rationale for PE was presented, emphasizing that avoidance behaviors—including PNES—are natural, self-protective responses to distress that provide relief in the short term, but ultimately keep PTSD symptoms from resolving. The main types of exposure used in treatment (imaginal and in vivo exposure) were explained briefly, as was the importance of processing Ralph’s traumas to reevaluate negative beliefs about himself and the world that may not be accurate. A description of the program and the length and number of sessions was provided. The duration and characteristics of his seizures were clarified so the therapist would be prepared if one occurred in session.
An agreement was reached regarding the best response to a seizure including the therapist continuing to speak with him and to apply gentle pressure to his shoulder until the seizure ceased. It was explained that once the seizure passed, any conversations or exposure activities would then be continued where they were left off. At the end of the session, Ralph was taught a breathing retraining exercise and was asked to practice this exercise for 10 min 3 times a day at home. This session was taped, and he was asked to listen to the tape at home once.
7.3 PE Session 2
At the second session, Ralph brought in his seizure log and it was examined together with his therapist. He had recently had a strong episode that was triggered by discovering the suspected betrayal of a friend. The significance of interpersonal stressors as triggers was discussed, and he was instructed to be mindful of this connection during the remainder of treatment. He admitted to practicing his breathing less than 3 times a day and was encouraged by his therapist to increase to the recommended times. He reported using his grounding techniques and had not had any seizures in a 24-hr period.
Common reactions to trauma and common symptoms of PTSD including PNES were discussed in greater depth. Ralph was very engaged in this discussion and identified several intrusive and avoidance symptoms he was having as well as changes in his self-perception.
The rest of the session focused on providing a more detailed rationale for in vivo exposure exercises and coconstructing a relevant fear hierarchy of situations that are objectively safe but have been avoided due to trauma-related distress. Ralph selected a few items that could on his list, including news stories and YouTube® videos about childhood sexual abuse and specifics about the town in which he lived when this rape occurred. He assigned tentative subjective units of distress (SUD) levels to each, on a 0 to 100 scale, and was advised to continue refining and adding to the list as he saw fit between sessions. The first in vivo exercise was collaboratively decided (reading an article about child abuse in boys) and assigned as homework, in addition to ongoing breathing retraining practice. In the event of a seizure during in vivo exposure, he was instructed to use breathing and grounding tools if possible during the aura phase and if the full-blown seizure occurred, to focus on regaining control of his breathing as soon as physically possible. If he felt that he had successfully returned to baseline, he was to return to the in vivo exercise.
7.4 PE Session 3
At the third session, imaginal exposure was introduced after reviewing Ralph’s in vivo homework. He had been practicing in vivo exposure at home which involved reading two different articles on child abuse in boys. When he read the first article, his SUD levels rose to 100 and a seizure occurred. However, he returned to the article later that day and could read through it in its entirety without incident. He could describe what he read in these articles and how it had helped him understand his behaviors as a child much better. He was instructed to continue reading these two articles for in vivo homework until the next session. He reported listening to his taped session and had been doing his breathing exercises 3 times a day.
After providing an in-depth rationale for imaginal exposure, Ralph was coached to complete his first imaginal exercise which was to last 45 min. He was instructed to close his eyes and recount inasmuch detail as he could recall the memory of his rape at age 5. His therapist made encouraging comments and asked for SUD levels at 5-min intervals to provide grounding for Ralph and to track his distress during the exercise. Imaginal exposure lasted only 30 min because during the first retelling of the memory, he experienced an intense seizure lasting 10 min. He also exhibited a strong emotional reaction, crying and yelling loudly for several minutes. The therapist implemented the seizure-response plan that she and Ralph had developed. The therapist ended the imaginal at this point, and praised Ralph for his hard work and emphasized how his emotional engagement is exactly what will be needed to help him digest the memory of what happened, and put it in the past.
Imaginal practice was followed per manual by 20 min of discussion (referred to as processing) about the experience and any thoughts or feelings it brought up. During processing, Ralph noted the similarity between the muscle tension he experienced during his seizures and the stiffening of his body that occurred during the rape. He seemed astonished to have discovered this connection and stated that he seemed to be starting to understand, for the first time, what had been a very confusing symptom. For homework, another in vivo exercise was selected from his list (YouTube videos on bullying), and Ralph was instructed to listen to his imaginal exposure recording daily and the tape of the entire session once.
7.5 PE Sessions 4 to 14
Interim PE sessions each focused on the conduct of imaginal exposure for 30 to 45 min, followed by processing discussions. In the fourth session, Ralph participated in 45 min of imaginal exposure. When he first initiated the memory retelling, his SUD levels were at 60 and quickly rose to100 remaining unchanged throughout the exercise. He could add to the retelling specific words that were said to him during the assault and additional details. During these retellings, he had two seizures as well as movements with his mouth and his head and his neck and his arms. Despite this, as soon as these episodes reduced in intensity and he could speak, he pressed ahead with the imaginal exposure.
Homework included listening to the session on tape, as well as reading a new article on child abuse with which he was provided. During the final processing portion of the session, he examined the emotions he had during the episode as well as shifts in how he saw himself now as compared with when he was 5. Intense feelings of anger toward the teenagers who assaulted him and toward his parents emerged. This emotion was validated, and he was to continue exploring this in the next sessions.
In the fifth session, Ralph retold his index trauma memory a total of 3 times. While he had two episodes during imaginal exposure, they were significantly briefer and less intense. His SUD levels began to show gradations in distress levels, starting out 25 and then fluctuating between 50, 75, and 100. During the final processing portion of the session, the therapist commented on his facial expression during his seizures and tics. He looked disgusted and shook his head side to side as if to say “no.” He wondered out loud if these gestures with his face and head might be a repetition of what he did during the assault. He continued processing his feelings of anger and rage and began to express feelings of sadness for a childhood interrupted. For homework, he was asked to listen to the taped session. A new image was added to his in vivo items (an image of a trailer that was very much like the trailer where he was attacked). He shared that although he continued to feel pain when approaching the traumatic memory, he was also beginning to see that he could get through this story with less emotional distress and was also starting to think about his future (e.g., initiating a romantic relationship and pursuing a potential job).
In the imaginal exposure portion of the sixth session, Ralph again retold the memory of being raped a total of 3 times. His SUD levels were now at 25 at the outset and were limited to 100 at the most difficult part of the rape. During the processing, Ralph’s therapist introduced the term hotspot to describe parts of a traumatic memory that are particularly distressing, and provided a rationale for fine-tuning the imaginal exposure to focus selectively on this hotspot at later appointments. Spontaneously, he recognized that although the sessions continued to be tough, he seemed to be reacting differently to the memory itself and that for the first time in the long time, he had been able to go out with friends, laughed and enjoyed himself.
During the seventh session, Ralph reported that he had a nightmare that triggered a PNES episode. He promptly decided to listen to the tape of his session to employ anxiety confrontation behaviors learned in therapy, and although he reported that his SUD levels while listening were at 100, he did get through the entire recording and felt it was a success. During the session’s imaginal exposure, his SUD levels began at 20 and peaked at 75. He had a very brief episode on the third retelling but could recover through deep breathing and continue. During the processing portion of the session, he recognized that he had become frozen during the actual assault and that this may have preserved him from a worse injury. He also began to consider the personal history of the three teenagers who assaulted him, an incipient humanization of the perpetrators. Finally, he examined how his own family reacted to the assault and that he was instructed that this was never to be discussed again. To his surprise, he realized that he had actually “forgotten” the event until he was around 30, but he identified effects from the assault throughout his life, including avoidance of children due to a fear that he might somehow hurt them.
During the eighth session, SUD levels were higher than in previous appointments, beginning at 50 and peaking at 100. During one retelling, Ralph yelled loudly and twitched dramatically, but managed to gain control through deep breathing and transferring ice from one hand to the next. Ralph shared in processing that he was experiencing higher SUD levels due to a flood of anger he was recently feeling. The difference between forgiveness and pardoning, and the possibility that he might choose to forgive for his own health without erasing the injustice perpetrated on him, was discussed. The emotions of fear and terror he had at age 5 and anger as a secondary emotion were examined. He was informed that as of next week, imaginal exposure would shift to focusing on an identified “hotspot.” The session was also spent beginning to plan for his transition back to his home state.
In the ninth session, although the plan had been to focus on a particular hotspot in this session, the intense anger he was experiencing and reelevation of SUD levels merited continuing with imaginal exposure of the entire memory again. Ralph went through the complete memory retelling 3 times again, with his SUD levels at 50 during the first two retellings and by the third one, rising from a 50 to a 75. When processing, Ralph worked on differentiating between the anger felt as an adult during the retelling versus the anger he might have felt as a 5-year-old during the assault. He concluded that he did not remember feeling anger during the assault. Therefore, he was instructed to stay with his experiences and emotions associated to the memory as a child, rather than introducing his adult perspective and emotions. During post–imaginal processing, he expressed distress with his anger and hatred toward his assailants partly because of his strict religious upbringing that would favor pardoning and “turning the other cheek.” He was assigned certain pages and passages to read about forgiveness. The importance of releasing the anger for his own health and to be able to direct his vital energy toward building his future was underscored.
In the 10th session, Ralph reported that over the weekend, he listened to his taped session for his homework and only experienced mild twitches near the end of the tape. He had also been active during the weekend, coming into the city and sightseeing. He had continued practicing the breathing exercises at least 3 times a day and said he was feeling a definite positive effect from this. The session focused on transitioning to Ralph’s “hotspot” as the focus of imaginal exposure. For Ralph, the most difficult part of the trauma pertained to when the leader of the teenagers had painfully squeezed his penis for a prolonged time and then proceeded to scoff at the size of it while the others laughed. Shifting to a more difficult but shorter part of the memory allowed for a greater number of repetitions: Ralph recounted the hotspot 10 times with SUD levels at a steady 100, but with no psychogenic episodes. He employed his deep breathing exercises in the middle and was very proud of himself at the end for tolerating the hotspot retelling without having an episode.
When Ralph was seen for his next-to-last therapy session, he again went through the imaginal exposure of the hotspot. His SUD levels were now reported at a 75, and he had no episodes during the exposure exercise. During the processing phase of the session, it was discussed that the next day would be his last session before traveling back home. He spent the rest of the session sharing how impressed he was at how his views of himself as an adult and a child, of his caregivers, and of the actual memory had changed. He was no longer haunted by the memory and felt he had mastered it. He had greater compassion for himself as a child and saw himself as a more confident and capable adult. He had begun to make plans to return to work and had also reconnected with a female friend for whom he had romantic feelings. Some time was spent discussing what to expect upon his arrival to his home and the importance of continuing to be involved in healthy behaviors. He shared that he had been considering signing up for a self-defense course. He was also aware that he would continue receiving treatment from his local therapist and psychiatrist and that they and his NYC therapist would be communicating.
7.6 PE Final Session
On the final session, Ralph engaged in his last exposure exercise and went over the full memory of his rape, with all details included. His SUD levels remained at a manageable level throughout, beginning at 0 and peaking at 75, although for the most part they remained at 50. He had no psychogenic episodes during the entire exposure process. He expressed profound satisfaction to see how “this memory had truly become a memory” that he was now able to discuss without having episodes or intense displays of emotion.
Relapse prevention was provided by going over the tools he had been given to confront psychogenic episodes and stress, his greater understanding of his trauma and of current episode triggers, and more importantly, the fact that he had learned to tolerate facing very stressful experiences without experiencing a PNES episode. He was advised to set limits in his interpersonal world, prioritizing caring for himself and to keep in mind that he was still recovering. A few of his family members had been very hurtful during the worst period of his PNES, and as such, it was suggested that he might need to keep some distance from them initially until he felt settled and strong enough to confront them. It was explained to him that should he need to contact this therapist again, he could do so to discuss PNES-specific questions, but that otherwise, he should rely on his therapist who could always also reach out to discuss his case. He expressed gratitude and hope for the future.
On the last session, his PDS score was in the moderate range for PTSD, and his depression (BDI-2) score was in the mild range (Table 1).
8 Complicating Factors
Ralph traveled unaccompanied from his state of origin and remained in a rented apartment for the 5 weeks during which he was receiving treatment. He traveled across state lines 3 times a week to come to session which required taking two buses and then walking several blocks through a very crowded midtown NYC. For his protection, if he suffered a seizure while transporting himself, a letter stating his diagnosis, his psychologist’s contact information, and a brief explanation about what type of emergency care he might or might not need were provided for him. He had to use this emergency note once only when he had a seizure in downtown Manhattan. Despite showing the note, he was still taken by an ambulance to a local NYC hospital. However, as soon as he produced the letter at the emergency room, the doctor contacted his psychologist and he was released very quickly.
As treatment was wrapping up, contact was made with his local psychotherapist to explain the treatment he had received, and his progress and change, and to discuss future treatment goals so that treatment could continue as seamlessly as possible now that he was no longer having seizures. He also needed preparation for how his existing social network might react to his seizure-freedom as many had become accustomed to this symptom and to his “disabled” status.
9 Access and Barriers to Care
In most cases of PNES, barriers to care are somewhat equally divided between patient-dependent and provider-dependent factors. Failure to follow up on mental health treatment recommendations is as high as 30% in PNES (Kanner et al., 1999). In fact, many patients tend to reject the diagnosis and continue to search for a medical explanation for their symptoms, which can lead to repeated consultations with different medical providers (Duncan, Graham, & Oto, 2014). Due to this, medical utilization costs, iatrogenic complications when treated incorrectly for epilepsy, vocational loss, identification with a “disabled role,” and severely affected quality of life (Luo, Goddeeris, Gardiner, & Smith, 2007) can result in this patient group. Ralph had certainly experienced many of these problems. Additional challenges when caring for patients diagnosed with PNES are their tendency to present with numerous other psychiatric and physical health comorbidities and a long history with mental health professionals that may negatively impact treatment expectancy, or otherwise impair the therapeutic relationship.
Other provider-dependent challenges include the confusion that exists as for who is responsible for treating these patients (neurology or psychiatry/psychology), the lack of formal training about PNES that professionals have, liability concerns if a seizure occurs in the therapist’s office, and questions the professional might have about the volitional nature of the symptoms (Baslet, Seshadri, Bermeo-Ovalle, Willment, & Myers, 2016).
The unfamiliarity of many mental health professionals regarding PNES can lead to patients being denied treatment. For when a patient makes the first contact with any new mental health professional, it might be helpful to counsel patients to use terms that might be more familiar to most therapists (i.e., dissociative disorder, conversion disorder rather than PNES).
Providers should also be aware that psychogenic episodes can present with extremely varied characteristics (semiology, duration, severity, etc.) which requires careful planning by the therapist for when/if seizures occur in session. Some therapists may have safety concerns when utilizing exposure approaches with patients who have epileptic seizures because there is a concern that secondary brain injury might result after an epileptic seizure. However, when the disorder involves PNES (as confirmed by EEG testing), it is necessary to understand that these episodes are “nonepileptic” and there is as much inherent danger in triggering a psychogenic seizure as there is in triggering other anxious responses. Improved knowledge and access to care for these patients will need to be tackled through education of existing psychologists and the new generations that are being formed (Baslet et al., 2016).
10 Follow-Up
Ralph has continued to remain in contact with the therapist through drop-in, online monthly support group meetings. He also contacted the therapist after experiencing 7 months of seizure-freedom to request a letter for the Department of Motor Vehicles certifying that he could resume driving. He has returned to work in the entertainment industry, has held several seasonal positions, and continues going to auditions.
Except for a single and brief seizure that consisted of twitches a few weeks after completing treatment and two seizures that occurred a year later during his regular psychotherapy sessions while discussing a very distressing topic, Ralph has remained seizure-free for 2 years. For a few months after completing therapy, he began a relationship with a woman which lasted a few months. This was the first serious relationship he had been in for at least 10 years. Although it ended, he saw it as an important achievement. He continues to see a psychiatrist at a local clinic.
11 Treatment Implications of the Case
PE therapy was a useful treatment modality for this dually diagnosed patient (PNES and PTSD). It improved his posttraumatic and mood symptoms, and eliminated the PNES he had been experiencing for 7 years. Two years after concluding his PE treatment, he has only experienced one brief seizure that consisted of twitches and two seizures that occurred a year later.
Through treatment, Ralph came to understand the traumatic origin of his posttraumatic stress symptoms including his psychogenic seizures and psychogenic movement disorder. When he experienced psychogenic seizures while engaged in imaginal exposure, he managed to clearly see how emotional distress triggered these episodes. Continuing the session as soon as the episode resolved provided him with the corrective experience that the “seizure” did not serve as an effective avoidance mechanism. Using relaxation and grounding tools, he practiced shortening and eventually controlling these episodes and achieved mastery over what had seemed “completely out of his control.”
12 Recommendations to Clinicians and Students
One of the most significant barriers to health care for patients diagnosed with PNES is that a substantial number of clinicians and students are unfamiliar with this diagnosis; therefore, becoming familiar with the disorder is strongly recommended for mental health professionals. There are a handful of webinars for mental health workers, books for psychotherapists, and online information sheets for general health professionals. Clinicians and students will benefit from understanding the psychogenic nature of the condition; the main risk factors for PNES, including psychological trauma; and the appropriate avenues for confirming the diagnosis. Growing evidence from clinical and research settings suggests that CBT programs that include exposure, mindfulness, and/or relaxation practices can be used effectively and safely with this population, with some adaptation to adjust for the seizure symptom. Patients are especially willing to engage in PE when they understand the rationale of how psychogenic seizures can be a dissociative symptom associated to PTSD and especially when they experience a seizure when they are discussing their traumatic history in session.
For clinicians to feel more comfortable with this population, they will need to be prepared to make certain modifications to their offices. Suggested changes might include removing heavy or pointy furniture from the patient’s vicinity, using an office with carpeted floor, and perhaps opting for conducting the session sitting on the floor. In addition, seizure semiology and appropriate clinician responses (e.g., agree to gently restrain head if banging, apply pressure to wrist or forearm for grounding, speak or not speak, etc.) if a seizure occurs in the office setting should be discussed as soon as possible. Seizure frequency should be monitored along with other regularly measured symptoms (e.g., mood, changes in functional behavior, etc.).
In conclusion, this is a very challenging patient group that presents with a symptom that can easily be confused with a neurological condition, but once the diagnosis of PNES has been made by an epilepsy center, this condition clearly falls within the scope of psychology. This case illustrates how a patient dually diagnosed with PNES and PTSD responded positively to a treatment that was originally designed to treat PTSD. It suggests that PE may be effective in treating this comorbid condition of psychogenic seizures as well. Further research using PE in patients dually diagnosed with PNES and PTSD is needed.
Footnotes
Acknowledgements
The authors acknowledge the support they received on this project from Dr. David Yusko.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
