Qualitative analysis of written accounts of functional/dissociative seizures

Objective

Subjective experiences of functional/dissociative seizures (FDS) are important for diagnosis and treatment formulation. This study aims to improve the symptomatological understanding of these seizures by analysing written narratives provided by authors with personal FDS experience.

Methods

Descriptions of FDS were extracted from contributions to the book “In Our Words: Personal Accounts of Living with Non-Epileptic Seizures”. Immediately preictal, ictal or postictal seizure symptoms were identified and subjected to summative content analysis. Themes and subthemes were derived inductively and deductively.

Results

Of 93 authors with FDS who submitted contributions to the book, 75 mentioned seizure symptoms. In most narratives, FDS involved a complex, multidimensional symptomatology. Six superordinate symptom domains emerged: ‘consciousness’, ‘movements’, ‘sensations’, ‘arousal’, ‘emotions’, and ‘cognition’. Within the superordinate theme of ‘consciousness’ (63/75 writings), ‘awareness’ was most frequently topicalised, followed by impairment of ‘self-control/ responsiveness’ and ‘disconnection’. The second most prominent superordinate theme of motor symptoms (58/75 authors) included ‘positive’ (excessive activity), ‘negative’ (reduced motor activity) and ‘mixed’ symptoms. Accounts of sensations similarly included ‘hypersensitivity’, ‘hyposensitivity’ and ‘mixed’ symptoms. ‘Pain’ was another prominent sensory subtheme (13/75 narratives). The ‘arousal’ theme (20/75 accounts) captured ‘hyper-‘ more often than ‘hypoarousal’. In the superordinate theme ‘emotions’ (22/75 authors) ‘anxiety’ symptoms were particularly prominent. The superordinate ‘cognition’ theme (14/45 writings) mainly captured ‘foggy thinking’ and ‘memory deficits’.

Conclusions

In the words of individuals with personal experience, FDS emerge as complex and heterogeneous phenomena spanning physical, emotional, autonomic and cognitive domains. The characterization of FDS symptomatology should help with earlier diagnoses.