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Research Request – Functional Seizures
Provide research on functional seizures, AKA non epileptic seizures, psychogenic non-epileptic seizures (PNES) or pseudo seizures in the following areas: • Assessment criteria that should be met to confirm the diagnosis. Brief • Functional implications of PNES e.g. How does it show up for an individual. • Treatment recommendations with specific evidence on Cognitive Behavioural Therapy.
Date August 02, 2019
Requester Shannon S22(1)(a)(ii) - irr
Researcher Craig S22(1)(a)(ii) -
Contents
Summary ………………………………………………………………………………………………………………………………. 2
What are Psychogenic non-epileptic seizures (PNES) ………………………………………………………………….. 2
Functional Implications …………………………………………………………………………………………………………… 3
Overview …………………………………………………………………………………………………………………………… 3
How the person may present during a PNES ………………………………………………………………………….. 3
Personality Disorders/Traits ………………………………………………………………………………………………… 4
Diagnosis Criteria …………………………………………………………………………………………………………………… 5
Overview …………………………………………………………………………………………………………………………… 5
Clinical Judgement ……………………………………………………………………………………………………………… 5
Early signs of PNES ……………………………………………………………………………………………………………… 5
Treatment Recommendations …………………………………………………………………………………………………. 6
Overview …………………………………………………………………………………………………………………………… 6
Cognitive Behavioural Therapy (CBT) ……………………………………………………………………………………. 6
Reference List ………………………………………………………………………………………………………………………… 8
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Summary
• The most commonly used term for the condition is Psychogenic non-epileptic seizures (PNES). • There is extensive literature and research on the subject and many public/community oriented support groups exist globally for those experiencing the condition. • Whilst there appears to be much understanding and clarity with regard to the functional impairments commonly associated with the condition, there is little clarity regarding guidelines or practice for the diagnosis of the condition, with video electroencephalogram (vEGG) appearing to be the gold standard diagnostic tool, but even this is questioned (This is explained further below). However, the general signs/indicators of an individual potentially having the condition appears to be clear. • There are no clear guidelines or practice for the treatment of the condition. However, a review of available literature clearly indicates that there is success in the use of Cognitive Behavioural Therapy (CBT) as a treatment. • Research in this area is continuing to date, and there is a general “excitement” amongst health professionals and those with the condition, of CBT being a promising treatment.
What are Psychogenic non-epileptic seizures (PNES)
The Australian government funded service HealthDirect website which links to Epilepsy Action Australia, identifies Psychogenic non-epileptic seizures (PNES) as one of the three major categories of seizures.
Psychogenic non-epileptic seizures have been labelled many names. Some common terms used are:
• Pseudo seizures • Dissociative seizures • Non epileptic events • Non epileptic attack disorder (NEAD) • Functional neurological disorder (FND) • Conversion disorder (psychiatric diagnosis)
PNES are a physical symptom of a psychological disturbance and are usually involuntary.
They are ‘sudden, involuntary changes in behaviour, sensation, motor activity, cognitive processing (can include change in level of consciousness) or autonomic function (e.g. blood pressure, heart rate) linked to psychological or social distress.’ These events look like epileptic seizures, but are not caused by abnormal electrical discharges in the brain. They are often triggered by an emotional or psychological cause rather than a physiological one and can be seen in people with or without epilepsy. PNES function as a coping mechanism. Research indicates that people with these events are more likely to use poor coping strategies to handle stress. 1
1 Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news- feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019).
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Functional Implications Overview A person experiencing PNES may have changes in behaviour, sensation, motor activity, cognitive processing, blood pressure and heart rate with psychological or social distresses 2. A narrative systematic synthesis of qualitative research identified five themes reflecting the experiences of those with the condition: seizure events, diagnosis, treatment and management, emotional events, and the impact of PNES on daily life. The research found that people experiencing the condition shared the following common traits associated with their wellbeing:
• Getting diagnosis and being misdiagnosed • Getting quality treatment and management for the condition • Extreme emotional events and difficulty in processing emotions • Stress with general uncertainty surrounding the condition • Negative experiences with healthcare professionals were common • Significant burdens associated with financial losses • Psychosocial losses • Difficulties in not being “heard” by health care professionals • Commonality of past traumas, such as sexual, emotional and physical abuse • Other impacts on daily life (family, friends, reclusing, feelings of being a burden, employment difficulties). 3
A Flinders University Australia cohort research study explored the psychosocial effects of PNES, finding that individuals have feelings of confusion and isolation. PNES may be triggered by anxiety, psychological tension and heightened defence against intense emotions. In some cases PNES may be a result of psychological trauma, previous psychiatric history, physical and sexual abuse or posttraumatic stress disorder. People diagnosed with PNES feel anger, shame, helplessness, and experience suicidal ideation. 4
How the person may present during a PNES In a research article by Curt LaFrance MD, Director of Neuropsychiatry at Rhode Island Hospital, PNES can be difficult to distinguish from epileptic seizures (ES), with both showing alterations in behaviour, consciousness, sensation, and perception5. The table below shows how a person may present whilst experiencing a PNES episode:
2 Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news- feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019). 3 G. Rawlings and M. Reuber, “What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies”, Academic Neurology Unit, University of Sheffield, UK, 2016. https://www.seizure-journal.com/article/S1059-1311(16)30116- 9/pdf 4 A.Thimm and M. Bellon, “The psychosocial effects of psychogenic non-epileptic seizures (PNES), The epilepsy report, issue 2, 2011, pp. 5-6 http://www.epilepsyaustralia.net/uploads/74689/ufiles/PDF/issue-2-2011.pdf 5 W. LaFrance MD, Eye-opening behaviors help diagnose nonepileptic seizures, Current Psychiatry. 2006 November;5(11):121-130 https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/Document/September-2017/0511CP_Neuroscience.pdf
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Behaviour Psychological non-epileptic seizure Epileptic seizure
Eye movement Eyes closed at onset and during seizure; geotropic eye Eyes open during seizure movement may be observed onset; may close briefly
Post-ictal nose Not present May be present
rubbing and cough
Weeping May be present Not present
Body movements Pelvic thrusting; out-of phase or side-to-side oscillatory Pelvic thrusting; quick, movements; chaotic and disorganized thrashing; ictal tonic posturing; stuttering; post-ictal whispering vocalization
Self-injury May be present May be present
Tongue laceration May be present May be present
Incontinence May be present May be present
Personality Disorders/Traits There is a theme in the research attempting to identify the extent of personality disorders/traits in those experiencing the condition.
A cohort study to determine whether patients with PNES have evidence of maladaptive personality, and whether they have a single or several different typical pathological personality profiles, concluded that maladaptive personality is common in patients with PNES and PNES are associated with several distinct profiles of pathological personality. °
Maladaptive personality features of borderline type and histrionic type are common, often in the form of trait accentuations rather than personality disorder in itself. However, all of psychogenic seizures in association serves as a coping mechanism. Patients with these events are more likely to use maladaptive coping strategies to handle stress. In PNES, psychologic conflicts are translated into a physical symptom -—seizure. ”
A controlled study had three goals one of which was to record detailed personality traits in patients with PNES. Cluster analysis showed three PNES subgroups. The largest subgroup’s characteristics
® M. Reuber et al., “Multidimensional assessment of personality in patients with psychogenic non-epileptic seizures”, J Neurol Neurosurg Psychiatry 2004;75:743-748. https://innp.bmj.com/content/jnnp/75/5/743.full.pdf
7 D. Adam, “Approach to Patients with ‘Psychogenic Non-Epileptic Seizures’: A Review”, The Journal of Psychiatry and Neurological Sciences, 2012;25:170-178. http://www.dusunenadamdergisi.org/ing/fArticledetails.aspx ?7MkID=104
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resembled borderline personality, with high scores on all dimensions. This subgroup had an 83.7% chance of continued PNES at follow-up. The third-largest subgroup’s characteristics resembled avoidant personality disorder, with increases in all but the dissocial behaviour scores. 8
Diagnosis Criteria Overview No clinical guidelines for diagnosis could be found, and there is much in the research and literature indicating the difficulty in the diagnosis and misdiagnosis of the condition. “The diagnosis of PNES can be challenging and requires careful evaluation to exclude true epileptic seizures or other medical conditions that cause seizures. Neither epileptic nor non epileptic seizures should be dealt with as a diagnosis of exclusion—they may coexist. 9
Video EEG (vEGG) Research on the diagnosis and assessment of PNES indicates that video EEG is the most significant diagnostic tool. Prolonged video EEG monitoring is considered the gold standard for diagnosis, but sometimes it can take a long time to get this organised. 10 However, there also appears to be a theme of non-consensus within the research, where video EEG is also considered restrictive. “It can be concluded that no EEG criterion is sufficient to make an unequivocal diagnosis of PNES. An abnormal inter-ictal EEG may be considered as a positive indication of epilepsy but has no significance for the diagnosis PNES.” 11
Clinical Judgement There are many health professionals asserting that clinical judgement can be a sufficient method of assessing PNES, where the importance of obtaining detailed history and physical examination of patients presenting with epileptic seizures is paramount. By understanding the nature of PNES in patients with disorders masquerading as epilepsy, more effective treatment can be given, even in cases when the diagnosis of coexistent epileptic seizures has already been established. 12
There are also schools of thought amongst health professionals in the arena, that the practice of relying only on vEEG is insufficient. While research shows that epileptiform discharges can elude the vEEG, other studies reveal that the test is considered the gold standard by experts for differentiating ES from PNES. It does not capture all epileptiform discharges, but the vEEG is still employed as a litmus test. 13
Early signs of PNES
A GP may suspect PNES if: • Antiepileptic medication does not reduce or stop the seizures • The seizures are always triggered by an emotional or stress response
8 G. Fricchione, et al., “Personality Traits in Psychogenic Non-Epileptic Seizures vs. Epileptic Seizures”, J Neurol Neurosurg Psychiatry, May 2004. https://www.jwatch.org/jn200408060000004/2004/08/06/personality-traits-psychogenic-non-epileptic 9 Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news- feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019). 10 “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news-feature-psychogenic-non- epileptic-seizures, (accessed August 01 2019). 11 J. Kuyk et al., “The diagnosis of psychogenic non-epileptic seizures: a review”, Seizure. 1997 August 6(4):243-53. https://www.sciencedirect.com/science/article/pii/S1059131197800726 12 S. Ali, “How to Use Your Clinical Judgment to Screen for and Diagnose Psychogenic Nonepileptic Seizures without Video Electroencephalogram”, Innov Clin Neurosci. 2011 Jan: 8(1): 36–42. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036551 13 C. Carlson, “A Proposed Etiology of Psychogenic Nonepileptic Seizures”, J Neurol Psychiatr Disord 1(1): 201, 2019. http://www.scienceinquest.com/open-access/pdf/jnpd/a-proposed-etiology-of-psychogenic-nonepileptic-seizures.pdf
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• The seizures usually occur in the presence of others • The characteristics of seizures are inconsistent with epileptic seizures. For • example, side-to-side head shaking, eyelid fluttering, cycling movements of the legs, pelvic thrusting, back arching, weeping, stuttering and talking and verbally responding • There are usually no injuries or incontinence • There is often a history of trauma, abuse or some form of psychiatric disorder such as depression or post-traumatic stress disorder (PTSD) 14
Treatment Recommendations Overview
No clinical guidelines for treatments could be found. Epilepsy Action Australia suggests treatment of PNES should consist of psychological or psychiatric intervention and that there is now a recent shift towards also using physical therapy in combination with psychotherapy. They also suggest that the following need to be determined: • Are there triggering or maintaining factors that are important, and to try to manage these. For example, is there an ongoing physical trigger that can be treated (for example pain, a neurological illness like migraine, etc.)? • Is there depression that can be treated? Are there specific psychological issues that the person feels are relevant and would like to explore? • Is there some form of ongoing stress that needs to be managed? • Some people find benefit from complementary treatments such as meditation, hypnosis and acupuncture. • About 60 to 70 percent of people find benefits from physical therapies and rehabilitation based on an understanding of their condition.
Epilepsy Action Australia also advises that PNES can be supported by various principles of neuropsychological interventions, including Cognitive Behavioural Therapy for any comorbid depression and anxiety, and various principles of neuro physiotherapy interventions, adding that medication management should be very restricted and mainly used to relieve the symptoms of comorbid anxiety or depression. 15
Cognitive Behavioural Therapy (CBT)
There is a rising trend in the literature indicating the use of and success of CBT in the treatment of PNES.
A clinical trial in 2014 set out to evaluate different PNES treatments compared with standard medical care (treatment as usual). The trial looked at the response of people who received the following treatments: Sertraline, a commonly used antidepressant medication, a form of cognitive behavioural therapy, a form of cognitive behavioural therapy and sertraline, and Standard medical care. The trial showed that: • CBT helped improve frequency of non-epileptic seizures in over half of the people who used this treatment.
14 Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news- feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019). 15 Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 https://www.epilepsy.org.au/epilepsy-trainer-news- feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019).
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• People treated with a form of CBT alone had a significant improvement in seizures – their seizure frequency decreased by 51.4% after treatment as compared to before treatment. Secondary measures (depression, anxiety, functioning, and quality of life) also improved. 16
A case report this year (2019) presented a case of a 24 year old male with a severe PTSD condition. When PTSD was suspected a diagnosis was confirmed via video-EEG. The patient underwent supervised withdrawal of antiepileptic medications with the initiation of CBT, which reduced the frequency of seizures. The report suggests that the diagnosis of PNES can present as a challenge and failure to diagnose its psychological nature can lead to a delay in the psychological intervention. CBT leads to a decrease in seizure frequency, and improvement in psychiatric symptoms, psychosocial functioning, and quality of life. It is important to consider PNES in the differential diagnosis of seizures presented by psychiatric patients, as CBT is necessary for better patient outcomes. 17
A much referenced randomized controlled trial in 2010 set out to compare CBT and standard medical care as treatments for PNES, and concluded that compared with standard medical care, cognitive-behavioural therapy significantly reduced seizure activity in patients with psychogenic non- epileptic seizures. 18
16 W. LaFrance Jr, et el., “Multicenter Pilot Treatment Trial for Psychogenic Nonepileptic Seizures: A Randomized Clinical Trial”, JAMA Psychiatry, 2014:71(9):997-1005. https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1884286 17 S. Kamil et al., “Cognitive Behavioral Therapy (CBT) in Psychogenic Non-Epileptic Seizures (PNES): A Case Report and Literature Review”, Behav Sci (Basel). 2019 Jan 29;9(2). https://www.ncbi.nlm.nih.gov/pubmed/30699899 18 L. Goldstein et al., “Cognitive-behavioral therapy for psychogenic nonepileptic seizures: A pilot RCT”, Neurology, 2010 Jun 15; 74(24). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905892
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Reference List
A.Thimm and M. Bellon, “The psychosocial effects of Cohort Research psychogenic non-epileptic seizures (PNES), The epilepsy report, issue 2, 2011, pp. 5-6 Study Full Review http://www.epilepsyaustralia.net/uploads/74689/ufiles/PDF/issue-2-2011.pdf
C. Carlson, “A Proposed Etiology of Psychogenic Nonepileptic Seizures”, J Neurol Psychiatr Research Review Disord 1(1): 201, 2019. http://www.scienceinquest.com/open-access/pdf/jnpd/a-proposed- etiology-of-psychogenic-nonepileptic-seizures.pdf
D. Adam, “Approach to Patients with ‘Psychogenic Non-Epileptic Seizures’: A Review”, The Research Review. Journal of Psychiatry and Neurological Sciences, 2012;25:170-178. http://www.dusunenadamdergisi.org/ing/fArticledetails.aspx?MkID=104
Epilepsy Action Australia, “Psychogenic non-epileptic seizures“, [website], 2017 Website https://www.epilepsy.org.au/epilepsy-trainer-news-feature-psychogenic-non-epileptic-seizures, (accessed August 01 2019).
G. Fricchione, et al., “Personality Traits in Psychogenic Non-Epileptic Seizures vs. Epileptic Research Review Seizures”, J Neurol Neurosurg Psychiatry, May 2004. https://www.jwatch.org/jn200408060000004/2004/08/06/personality-traits-psychogenic-non- epileptic
G. Rawlings and M. Reuber, “What patients say about living with psychogenic nonepileptic Narrative systematic seizures: A systematic synthesis of qualitative studies”, Academic Neurology Unit, University of synthesis of Sheffield, UK, 2016. https://www.seizure-journal.com/article/S1059-1311(16)30116-9/pdf qualitative research. Full document J. Kuyk et al., “The diagnosis of psychogenic non-epileptic seizures: a review”, Seizure. 1997 Research Review August 6(4):243-53. https://www.sciencedirect.com/science/article/pii/S1059131197800726
L. Goldstein et al., “Cognitive-behavioral therapy for psychogenic nonepileptic seizures: A pilot Randomized RCT”, Neurology, 2010 Jun 15; 74(24). Controlled Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905892
M. Reuber et al., “Multidimensional assessment of personality in patients with Cohort Study. Full psychogenic non-epileptic seizures”, J Neurol Neurosurg Psychiatry, 2004; 75:743–748. paper. https://jnnp.bmj.com/content/jnnp/75/5/743.full.pdf
S. Ali, “How to Use Your Clinical Judgment to Screen for and Diagnose Psychogenic Nonepileptic Literature Review. Seizures without Video Electroencephalogram”, Innov Clin Neurosci. 2011 Jan: 8(1): 36–42. Full article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036551
S. Kamil et al., “Cognitive Behavioral Therapy (CBT) in Psychogenic Non-Epileptic Seizures Case Report and (PNES): A Case Report and Literature Review”, Behav Sci (Basel). 2019 Jan 29; 9(2). Literature Review https://www.ncbi.nlm.nih.gov/pubmed/30699899
W. LaFrance Jr, et el., “Multicenter Pilot Treatment Trial for Psychogenic Nonepileptic Seizures: Clinical Trial. Pilot A Randomized Clinical Trial”, JAMA Psychiatry, 2014:71(9):997-1005. Study https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1884286
W. LaFrance MD, “Eye-opening behaviors help diagnose nonepileptic seizures”, Full research review Current Psychiatry. 2006 November;5(11):121-130 article https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/Document/September- 2017/0511CP Neuroscience.pdf
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