Seizure Experience Research Articles

Between fear of death and just a warning sign: Seizure severity scales neglect the subjective quality of periictal perceptions

The burden of epilepsy is not only related to seizure frequency; the severity of epileptic seizures considerably affects patient’s lives. A number of seizure severity scales have thus been developed for a systematic assessment. Items considered relevant in these scales mainly pertain to objective features, such as seizure duration, loss of consciousness, and seizure-related injuries. In contrast, subjective experiences of seizures are considered only in their functionality as “warnings”, whereas the quality of subjective perceptions and feelings are disregarded phenomena. This leads to a gap between the often-distressing subjective experiences which people with epilepsy remember from their seizures and the perception of physicians which may negatively impact physician-patient communication and interaction and question their valid use as treatment outcomes. We advocate here to develop new seizure severity assessments in collaboration with patient organizations which integrate also the subjective quality of seizures.

INTERPRETING THE LANGUAGE OF INFERENTIAL EPILEPSY IN EMILY DICKINSON’S POETRY

<p>This paper explores the possibility that Emily Dickinson was living with a form of epilepsy. It uses research by contemporary neurologists, who have differentiated how patients with epileptic seizures, and patients with non-epileptic seizures, use language features to describe their subjective seizure experiences. The features of language used by patients with epilepsy have been applied to the reinterpretation of a series of Emily Dickinson’s poems that appear to be related to neurological experiences, especially ‘inner’ poems focusing on the operations of the “Brain”, “Thought”, “Mind”, and “Consciousness”. Further contemporary research into the auras of seizures, identified four signs that could stay in a person’s memory if they remained conscious during a simple partial seizure (SPC). These are “suddenness, passivity or automatism, great intensity, and strangeness”, which provided insights into Dickinson’s ‘inner’ poem, Fr340, “I felt a Funeral, in my Brain,”. The identification of the sensory manifestations of auras, such as, Somatosensory, Visual, Auditory, Vertiginous, Olfactory, and Psychic auras, has also helped to clarify aspects of Dickinson’s ‘inner’ poems, especially Fr355, “It was not Death, for I stood up,”. The autobiography of the Welsh writer, Margiad Evans, identified language use arising from epileptic episodes, including the response of ‘giggling’, and the appearance of a ‘double self’, which revealed a close association to Dickinson’s language use in a range of poems. The application of research into autoscopy and “Déjà” experiences, and their appearance in poems, strengthened critical reading interpretations as expressions of inferential epileptic experiences. Finally, the poems featuring neurological experiences are seen to possess empirical dimensions that might help to explain Dickinson’s consultations with Dr Williams in Boston during 1864 and 1865, as a quest for a diagnosis and remedy for the disruptions to her consciousness.</p>

Audiogenic Seizures and Social Deficits: No Aggravation Found in Krushinsky-Molodkina Rats.

Epilepsy or epileptic syndromes affect more than 70 million people, often comorbid with autism spectrum disorders (ASD). Seizures are concerned as a factor for social regression in ASD. A stepwise experimental approach to this problem requires an animal model to provoke seizures and monitor subsequent behavior. We used rats of the Krushinsky-Molodkina (KM) strain as a validated inbred genetic model for human temporal lobe epilepsy, with recently described social deficiency and hypolocomotion. Generalized tonic-clonic seizures in KM rats are sound-triggered, thus being controlled events in drug-naïve animals. We studied whether seizure experience would aggravate contact deficits in these animals. Locomotor and contact parameters were registered in "the elevated plus maze", "socially enriched open field", and "social novelty/social preference tests" before and after sound-provoked seizures. The triple seizure provocations minimally affected the contact behavior. The lack of social drive in KM rats was not accompanied by a submissive phenotype, as tested in "the tube dominance test", but featured with a poor contact repertoire. Here, we confirmed our previous findings on social deficits in KM rats. The contact deficiency was dissociated from hypolocomotion and anxiety and did not correlate with seizure experience. It was established that experience of rare, generalized tonic-clonic convulsions did not lead to an impending regress in contact motivation, as seen in an animal model of genetic epilepsy and comorbid social deficiency. One of the oldest animal models for epilepsy has a translational potential to study mechanisms of social behavioral deficits in future neurophysiological and pharmacological research.

Subjective seizure symptom reporting in functional/dissociative seizures and epilepsy: Effects of sampling technique and patient characteristics

BackgroundDifferences in subjectively reportable ictal experiences between epilepsy and functional/dissociative seizures (FDS) have received less attention than visible manifestations. Patients with FDS (pwFDS) tend to report seizure symptoms differently than patients with epilepsy (pwE). The effects of symptom elicitation method and mediation by psychopathological traits have not been examined and may aid in differentiating the disorders. MethodAnalysis of responses of 24 pwE and 28 pwFDS in interviews exploring ictal experiences through open questioning followed by structured closed questioning using possible symptom prompts (74-item modified Psychosensory-Psychomotor Phenomena Interview, PPPI); self-report of psychological profile (HADS-A, HADS-D, PHQ-15, DES-T, THQ, PCL-C). ResultsSymptom prompting with PPPI elicited three times more seizure symptoms than open questions in pwE (median 34 vs. 11.5, p = 0.005) and over four times more in pwFDS (42.5 vs. 11, p = 0.001). Intra-ictal symptoms were reported freely more frequently by pwE (median 6.5 vs. 4, p = 0.005), while pwFDS reported more pre-ictal symptoms after prompts (median 6 vs 14.5, p = 0.004).The difference between freely reported and PPPI-elicited symptoms correlated with different psychopathological traits in pwE and pwFDS. Symptoms of anxiety (HADS-A) correlated more strongly with prompted symptoms among pwE than pwFDS (z = 2.731, p = 0.006). ConclusionPrompting generates more detailed ictal symptom profiles than simply encouraging patients to narrate their subjective seizure experiences. While pwFDS freely reported fewer symptoms related to the intra-ictal period compared to pwE, pwFDS reported more pre-ictal symptoms than pwE when prompted. Differences in the psychopathological traits associated with the number of peri-ictal symptoms captured by symptom prompting in pwE and pwFDS possibly reflect etiological or psychological differences between these patient groups.

“What is this strange sensation?” A qualitative exploration of metaphors used to verbalise hard-to-describe experiences by people with epilepsy

Mental health comorbidities are frequent in epilepsy. Consequently, psychotherapy is becoming increasingly important. To address the psychological needs of people with epilepsy (PwE) it is essential to understand the subjective experiences of seizures better. There is little research on how people report seizures, and which psychological representations they have. We conducted a thematic analysis based on 42 (micro-phenomenological) interviews with 15 participants on their experiences of seizures. In these interviews, we identified three categories of seizure descriptions: (1) phenomena related to the body and emotions; (2) the moments that are difficult to describe; and (3) the use of figurative language and metaphors. Paroxysmal physical and psychological sensations were often reported spontaneously by the participants. The moments that were difficult to describe were expressed, among other things, through the use of paradoxes or the report of a ‘strange’ feeling and led participants to use figurative language. As these metaphors can reveal important information about people’s subjective experiences, they were analyzed in detail. We identified the three main types of metaphors that the participants used most frequently: (1) perception, (2) nature, and (3) battle. The theme of battle was most frequently used in different forms and was closely related to the metaphors from the fields of perception and nature, thus representing a key point in the personal experience of seizures. These findings can contribute to developing psychotherapeutic approaches for the treatment of seizure disorders.

Exploring the relationships between composite scores of disease severity, seizure-freedom and quality of life in Dravet syndrome

BackgroundIn Dravet syndrome (DS), a rare epileptic and developmental encephalopathy, the effectiveness of a new treatment is predominantly measured in terms of seizure frequency. However, this may not fully capture the impact of a treatment on the broader aspects of the syndrome and patients’ health-related quality of life (HRQoL). Using a previously published survey which collected data from DS patients and their carers on the broader manifestations of their syndrome, their HRQoL, and their experience of seizures, this study created composite measures of symptom severity to offer new perspectives on the multifaceted aspects of this rare condition.MethodsSurvey responses on the severity of physical and psychosocial symptoms were combined with independent assessments of disability and care need, to generate three composite symptom scores assessing the manifestations of DS (physical, psychosocial and care requirements). Variation in HRQoL was investigated in multiple regression analyses to assess the strength of association between each of these composite measures and three forms of seizure measures (seizure frequency, days with no seizures and longest interval without seizures), as experienced over a 4- and 12-week period.ResultsComposite scores were calculated for a cohort of 75 primarily paediatric patients who were enrolled in the study. Strong associations were found between each of the three composite symptom scores and each of the three seizure measures, with the regression coefficient on symptom score highly significant (p ≤ 0.001) in all nine comparisons. Separate regressions using predictors of HRQoL (Kiddy KINDL and Kid KINDL) as the dependent variable were inconclusive, identifying only behavioural/attention problems and status epilepticus as significant predictors of HRQoL.ConclusionsThese results allow the development of a composite score that may be useful in developing a clinical understanding of the severity of DS for an individual patient and establishing their treatment goals. Where measurement of long-term sequalae of disease is not feasible, such as clinical trials, correlation of the composite score with experience of seizures and seizure-free periods may allow a better contextualisation of the results of short-term assessments.Trial registrationGerman Clinical Trials Register (DRKS), DRKS00011894. Registered 16 March 2017, http://www.drks.de/ DRKS00011894.

Knowledge of and attitudes toward epilepsy and first aid for seizures in Al-Hasa, Saudi Arabia

Background: Epilepsy is one of the common disorders in Saudi Arabia, and the stigma associated with it is influenced by poor awareness regarding the disease in the general community. Objective: This study aimed to evaluate the community-level general knowledge of epilepsy and first aid for seizures in relation to sociodemographic characteristics and assess the attitude toward epileptic patients. Methods: A cross-sectional study was conducted using a questionnaire survey among adults in Al-Hasa, Saudi Arabia, in 2021. Results: Among the 391 participants, 66.8% were 18-30 years old, and 70.8% were females. Among these, 23.5% had good general knowledge about epilepsy, while 29.7% had good knowledge about first aid for seizures. An educational level of diploma/higher, working or studying in the medical field, and lack of seizure experience were significantly associated with good general knowledge about epilepsy and first aid for seizures. Female sex was associated with good knowledge of seizure first aid. However, 41.2% of the participants were not aware of the safety aspects of the COVID-19 vaccine for epileptic patients. Conclusion: Overall knowledge of epilepsy and first aid for seizures was suboptimal among most participants. Many participants did not know much about the safety of COVID-19 vaccines for patients with epilepsy. The knowledge level on epilepsy and its first aid differed significantly across different types of occupation, education levels, and sex.

Epilepsy: Lessons for clinicians from popular memes on social media

Memes are a very effective, visual means of communication on social media sites. In this study, we examined some of the most popular memes posted on Instagram labeled with an epilepsy hashtag, in order to gain an insight into the thoughts, feelings and concerns of people with epilepsy. ‘Awareness’, ‘warrior’ and ‘sucks’ were the three most common words paired with epilepsy in the hashtag search. The most popular (liked or shared) #epilepsy memes could be classified into 9 broad categories: Seeking advice, Raising awareness, Inspirational quotes, Celebrations of seizure free milestones, Living with Epilepsy, Sharing the diagnosis, Experience of seizures, Medications and Doctor/patient interactions. Popular memes in this latter category highlighted people’s difficulties in taking in information with respect to both the breadth and complexity of the discussions in neurological consultations. Other memes in this category depicted the social and psychological challenges associated with some investigations, particularly video-telemetry studies. Analyses of some of the most popular memes posted on social media point to a number of ways in which we can improve the patient/clinician interaction. Practical strategies to address some of these issues are discussed. Memes posted on social media by people with epilepsy provide a valuable source of feedback for clinicians which enables us to improve the care we provide for this group.

Evaluation of the effect of anti-epileptic drugs on serum immunoglobulin levels in children with epilepsy

Introduction: Most antiepileptic drugs may have side effects such as behavioral disorders and immunological changes, which can affect serum levels of immunoglobulins. Objective: To study the effect of anticonvulsant drugs on serum levels immunoglobulins in children referred to the Taleghani educational center of Gorgan during 2015-2016. Patients and Methods: All pediatric patients with the first seizure experience diagnosed with diagnostic procedures such as history, physical examination and electroencephalography were diagnosed and treated with phenobarbital or levetiracetam were included. At first and at the end of the study, 5 cc blood samples were taken for measuring serum IgA, IgM, IgG and IgE levels. The time between two blood sampling was six months. Data were analyzed using SPSS version 18 software. Results: A total of 179 children were enrolled in the study, of which 104 (58.1%) were male and 75 (41.9%) were female. Around 78 (43.6%) were treated with levetiracetam and 101 (56.4%) were treated phenobarbital. The mean age of the patients was 3.33 ± 1.21 years. Based on statistical tests, the significant effect of both drugs on all indices was significant, which in all cases reduced the level of immunoglobulins. Additionally, the effect of drugs or, in other words, the amount of changes caused by them on different indices in terms of drug used was also investigated, which results showed no significant difference between the effect of the two drugs. Conclusion: From the results of this study, it can be concluded that both levetiracetam and phenobarbital have potentially influenced the immunoglobulins with the same effect. The results of this study may indicate the need to pay attention to the vulnerability of these children to various types of infections.

The inside experience of epilepsy: An essay about the importance of subjectivity

This essay addresses three aspects of the inside experience of epilepsy, i) the high semiological significance of subjective seizure symptoms, ii) the therapeutic consequences, both positive and negative, of subjective seizure experiences, and iii) the importance of recognizing the patient as the ‘inside expert’ of epilepsy. Subjective symptoms are often not spontaneously reported but ignoring them may be associated with serious risks. They can be experienced as neutral, negative or positive, and this can have important consequences for therapy. Only patients have full and first-hand knowledge of subjective symptoms but an understanding of these symptoms and an adequate response to them requires expert assistance. The inside and outside views of seizures are different but of equal importance. To get the full picture, both are needed to supplement each other.

KARAKTERISTIK KLINIS PASIEN KEJANG DEMAM YANG DIRAWAT DI RUMAH SAKIT BAPTIS BATU

Pendahuluan: Kejang demam adalah jenis kejang tersering yang ditemukan pada pasien anak. Kejang demam dialami pada anak usia 6 bulan – 5 tahun disertai dengan peningkatan suhu tubuh. Penelitian ini bertujuan untuk menggambarkan karakteristik demografis dan klinis kejang demam pada anak. 
 Metode: Desain penelitian adalah potong lintang, dilakukan pada 41 pasien kejang demam yang dirawat inap di Rumah Sakit Baptis Batu periode Januari 2017 – Oktober 2018. Data rekam medis dikumpulkan dan karakteristik klinik pasien digambarkan dalam bentuk tabel.
 Hasil: Kejang demam lebih banyak diderita oleh anak laki-laki (61%), sebagian besar berusia 1 sampai 2 tahun (46,3%). Kejang umum (97,6%) merupakan jenis kejang yang sering ditemukan dengan durasi <15 menit (95,1%). Pasien kejang demam lebih banyak yang mengalami satu kali episode kejang (73,2%) dengan jenis kejang demam sederhana (70,7%). Suhu tubuh anak-anak mencapai ≥38⁰C (68,3%) dengan jumlah leukosit yang normal (63,4%).
 Simpulan: Demam pada anak dengan usia <2 tahun, terutama dengan jenis kelamin laki-laki berpotensi menimbulkan kejang demam.

Testing the ‘seizure scaffold’: What can experimental simulation tell us about functional seizures?

IntroductionIt has been suggested for over 100 years that patterns of neurological symptoms and signs in functional neurological disorders may be shaped at a neural level by underlying ideas or preconceptions how neurological symptoms present. This study used experimental simulation to probe ideas about seizures in healthy volunteers, with a view to compare with features commonly observed in functional and epileptic seizure disorders. MethodsSixty healthy volunteers were instructed to simulate an epileptic seizure. The episodes were video-recorded and assessed by three qualified markers for the presence of clinical features commonly observed in functional seizures (FS), epileptic seizures, and syncope. ResultsSimulated seizures were hyperkinetic (83%), hypokinetic (7%), or staring (10%). Fifty-two percent had their eyes open and 45% eyes closed. Tremor was observed in 70%, while clonic jerking was only present in 17%. The majority of volunteers maintained a normal or floppy body posture. Head shaking side-to-side was observed in 38%, while guttural cries, stertorous breathing, tearfulness, and hyperventilation were absent in all volunteers. DiscussionOur results suggest that simulated seizures not only resemble FS more closely than epileptic seizures but also show some important differences. Subjective seizure experiences in people with FS, not captured by this experimental simulation, remain a core determinant of semiology.

A single episode of early-life status epilepticus impacts neonatal ultrasonic vocalization behavior in the Fmr1 knockout mouse

Fragile X syndrome (FXS) is a genetic disorder caused by a trinucleotide (CGG) expansion mutation in the Fmr1 gene located on the X chromosome. It is characterized by hyperactivity, increased anxiety, repetitive-stereotyped behaviors, and impaired language development. Many children diagnosed with FXS also experience seizures during their lifetime. However, the underlying etiology of the relationship between FXS and epilepsy is not fully understood. Ultrasonic vocalizations (UVs) are one tool that may be used to measure early behavioral changes in mouse pups. In the present study, neonatal UVs were analyzed as a measure of communicative behavior in a mouse model of FXS, both with and without early-life seizures (ELSs). On postnatal day (PD) 10, status epilepticus (SE) was induced via intraperitoneal injections of 0.5% kainic acid (2.0 mg/kg) in male Fmr1 knockout (KO) and wild-type (WT) mice. On PD 12, all pups were temporarily isolated from their dam and UVs were recorded. Significant alterations were found in both spectral and temporal measures across genotype and seizure groups. Early-life seizure experience resulted in a significant increase in the quantity of UVs only in WT animals (p < 0.05). We also found that while there was no difference between genotypes in the total number of vocalizations made, calls produced by Fmr1 KO mice were significantly shorter and had a higher peak frequency compared with WT mice. Overall, these findings support the use of vocalization behavior as an early phenotypic marker and highlight the importance of utilizing double-hit models to better understand comorbid disorders.

Margiad Evans (1909–1958): A writer's epileptic experiences and their reflections in her work

Margiad Evans, in the period 1930–1950, an acclaimed English writer, developed convulsive seizures at age 41 and died at age 50 from the tumor that had caused them. In her book “A Ray of Darkness”, she describes in profound analytic detail her seizure experiences, especially the isolated auras that had preceded her first convulsion by many years. Their ultimate strangeness echoed a long-standing fascination by the indescribable, which is a recurrent theme in her literary work. Another aspect of her poetry, a focus on the experience of the moment that cannot be retained is likewise reminiscent of the volatility of her aura experiences.Of three texts that are presently being published posthumously, one (“The Nightingale Silenced”) is a fragmentary continuation of her epileptic experience. She considered that she still had a lot to describe, contributing the inside of the “outside inside story” of epilepsy, clues on which neurology could work to obtain a deeper understanding. To have a focal motor seizure feels like being invaded by an alien force. An urge to run and heautoscopy are other recorded symptoms. Evans documents the experience of a long-lasting, predominantly nonconvulsive status epilepticus merging into aura continua where her earlier aura experiences appear transformed into a quasipsychotic state. But even in the account of “this appalling, this hellish condition”, she is careful to maintain her high literary standards. Together, the two reports on her disease seem to represent the only comprehensive inside case history of epilepsy, a most valuable legacy.

QOLP-41. ASSESSING CAREGIVERS’ OF PATIENTS WITH PRIMARY BRAIN TUMORS EXPERIENCES WITH AND NEEDS RELATED TO SEIZURE MANAGEMENT

Abstract Family caregivers of persons with primary brain tumors report high levels of distress. Information is limited, however, regarding family caregivers’ experiences and needs concerning the risk and management of seizures in this population. In this qualitative descriptive study, we conducted one-on-one interviews to describe the experiences of family caregivers’ of persons with primary brain tumors who have had and who have not yet had a seizure. We sought information on how they coped with this issue and what information they needed regarding management of out-of-the-hospital seizures. We conducted 15 interviews using study-specific interview protocols; 10 caregivers with seizure experience and 5 caregivers without seizure experience. Caregivers were, on average, 52 years old, predominately white (93.3%), college graduates (66.7%), and were employed full-time (53.3%). The relationship between caregiver and care recipient was spouse (46.7%), other family member (46.7%), and friend (6.6%). Most caregivers provided care everyday (46.7%) and for more than 8 hours per day (33.3%). Themes emerged around three major domains: 1) caregiver challenges regarding seizures, 2) desired resources/information about seizures, and 3) timing of delivery of these resources. Caregivers often reported being fearful of seizures and the majority (93%) expressed difficulty with knowing when to call EMS. In terms of desired resources, opinions were split between preferring written materials versus online resources with most participants (87%) stating that videos or graphics detailing seizures would be helpful. In terms of delivery timing, most (66.7%) thought that training should come after diagnosis versus at the time of diagnosis citing reasons such as too much other information to absorb and overall inability to focus. Future studies will use this information to develop and pilot a seizure-focused supportive caregiver intervention that is tailored and caregiver-directed and that can be incorporated into standard neuro-oncology clinical practice.

Epilepsy in Papua New Guinea: a longitudinal cohort study

Epilepsy affects up to 1-4% of children living in low income and middle countries, however there are few studies of the problems faced by children with epilepsy in such settings....

The epileptic experience in the works of Dostoyevsky and Machado de Assis

Towards the end of the 19th century, two writers who are considered the uppermost representatives of their respective national literatures, Dostoyevsky of Russia and Machado de Assis of Brazil had epilepsy, probably both temporal lobe epilepsy, but their attitudes were opposite. Dostoyevsky was as open about his diagnosis as Machado was secretive, but both included seizure experiences in their works.Two of Dostoyevsky's many epileptic characters, Prince Myshkin in The Idiot and Kirillov in Devils, report the same ecstatic aura as Dostoyevsky did privately. That Kirillov only has isolated auras probably reflects the early phase of Dostoyevsky's epilepsy. A hitherto overlooked feature, these reports with numerous reformulations and metaphors are linguistically characteristic for self-reports of epileptic auras, related to the indescribability of the experiences. In Idiot, two seizure prodromes with great artistic skill are integrated into the fictional context.Machado in his writings never talked overtly about seizures and epilepsy, but experiences of complex partial seizures can be identified in two of his novels, Brás Cubas and Quincas Borba. One depicts a complex visual illusion, the other seems precipitated by a coincidence of several ambivalent decisions with a specific memory. Quincas Borba (1891) has several features that can be understood as an homage to Dostoyevsky's Idiot (1869). Both writers share the notion that seizures can be triggered by strong emotions, and both stand out by their mastership of seamlessly integrating seizure experiences into the fictional and psychological cosmos of their novels.This article is part of the Special Issue “NEWroscience 2018”.

Epilepsy and identity: a linguistic analysis of seizure label semantics

ABSTRACT Background: The stigma of epilepsy still holds fast today, and consequently results in people with epilepsy not seeking the support they require. To date, little research has been conducted into seizure label preferences. This paper contributes new findings to this growing body of research. Methods: Participants with epilepsy completed an online survey stating their preferences for seizure labels: seizure; fit; attack; episode; s/he is having a seizure/fit; and s/he is fitting/seizing. Through a thematic linguistic analysis of the participants’ comments, this paper investigates the influence of semantics and grammatical variation to assess how these linguistic features portray epilepsy. The semantic implications of individuals’ personal seizure labels are also explored. Results: The consensus falls with seizure and s/he is having a seizure, as the alternative choices were comparatively less popular and illustrated many negative connotations. The participants’ explanations their ‘least preferable’ rankings were categorized and thematically aligned. This proposed taxonomy offers insight into how different labels shape identity and contribute to the stigma. The grammatical variations of the phrases appear to contribute to (mis)representing seizure trajectory and imagery. The personalized seizure labels offered by a selection of participants may also be suggestive of the seizure experience itself. Conclusions: The consensus of these results can guide healthcare professionals and the media to opt, in the first instance, for the terms/ phrases that have been thought as the most preferable, and to avoid using those ranked by the majority as least preferable.

Epilepsy, literature and linguistics: spotlighting subjective symptoms

Literature can offer a wealth of information about epilepsy: from complex narratives to children’s picture books, it can help broaden people’s understanding, show what it is like to live with...

Experience of psychogenic nonepileptic seizures in the Canadian league against epilepsy: A survey describing current practices by neurologists and epileptologists

PurposePsychogenic nonepileptic seizures (PNES) are one of the most common differential diagnoses of epilepsy. Our objective is to describe current medical care in Canada and identify patterns of practice and service gaps. MethodsIn 2015, a 36-question survey was sent via email to the 131 members of the Canadian League Against Epilepsy. The questions were designed after literature review and discussion with the ILAE PNES Task Force. Questions were separated into 5 sections: 1) the role of the respondent and their exposure to PNES, 2) diagnostic methods, 3) management of PNES, 4) etiological factors, and 5) problems accessing health care. ResultsSixty-two questionnaires were analyzed (response rate: 47%). Most respondents were epileptologists (76%). The majority of respondents personally diagnosed PNES and communicated the diagnosis to the patient, but only 55% provided follow-up within their practice and only 50% recommended or arranged treatment. Many (35%) were either unfamiliar with the diagnosis of PNES or inexperienced in arranging or offering treatment. Most (79%) provided follow-up to patients with concomitant epilepsy, but when PNES was the sole diagnosis follow-up rates were low. Although 84% of respondents felt that individualized psychological therapy was the most effective treatment, 40% of patients were not referred to psychotherapy and in most cases availability such therapy was low (30–60%). ConclusionsCanadian health professionals’ understanding of PNES mostly reflects current international expert opinion. Once diagnosis is made however, the majority of patients are discharged from neurological services without appropriate psychological care.