Purpose: This study characterized the lived experiences of individuals with hyperacusis and misophonia as expressed in Reddit online communities, using natural language processing (NLP) to identify key themes in patient-generated discourse. We used Reddit communities as a primary data source so that we could obtain nuanced insight into lived experiences and patient priorities without constraining responses using narrowly defined symptoms or quality of life domains.

Method: Text data were extracted from five subreddits related to hyperacusis and misophonia via the Reddit Application Programming Interface (r/noxacusis, r/TTensorTympaniS, r/hyperacusisadvocacy, r/hyperacusis, and r/misophonia). Hierarchical cluster analyses were conducted on the two largest datasets (r/hyperacusis and r/misophonia) to identify key discussion themes based on the statistical analysis of textual data using Reinert’s hierarchical classification. The analysis included 16,793 misophonia posts (67,045 text segments) and 4,247 hyperacusis posts (17,398 text segments). The clusters were named by four experts through evaluation of representative text segments within each cluster.

Results: For each disorder, cluster analysis yielded eight clusters that were further classified into two overarching domains. The two hyperacusis domains encompassed themes related to “Sensory Experience and Symptom Management” and “Medical, Emotional, and Social Burden”. The two misophonia domains encompassed themes related to “Triggers and Management Strategies” and “Community Engagement, Research, and Co-morbidities”. Shared thematic areas across both disorders included psychological burden, trigger management, research outreach and information-seeking, and online community support. Hyperacusis-specific clusters addressed somatic sensations, hearing protection, co-morbid tinnitus, and sound sensitivity setbacks. Misophonia-specific clusters encompassed emotional reactions to triggers, neurodevelopmental comorbidities, interpersonal impacts, and specific auditory and visual triggers.

Conclusions: NLP of Reddit discourse revealed free-form, patient-generated perspectives on the functional, psychological, and sensory dimensions of hyperacusis and misophonia. These findings complement standard clinical measures of decreased sound tolerance, which primarily characterize sensory processing, by providing additional insight into the functional and psychological dimensions of patients’ experiences that may be less consistently captured by structured surveys and interviews.