"If we had blood pouring out of our eyeballs, people would notice": A qualitative exploration into the psychological experience of cluster headache

Whitley, Helena, Nolan, Wayne, Norton, Elisabeth and Gracey, Fergus (2025) "If we had blood pouring out of our eyeballs, people would notice": A qualitative exploration into the psychological experience of cluster headache. International Journal of Clinical Practice, 2025. ISSN 1368-5031

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Abstract

Background: The primary headache disorder, cluster headache (CH), is known as one of the most painful conditions a human can experience. This study aimed to explore the psychological experience of living with CH, both during acute headache attacks and between attacks. Methods: Semistructured interviews were conducted with 13 adults with episodic or chronic CH. Interviews were carried out via Microsoft Teams or the telephone. Qualitative interview data were analysed using Reflective Thematic Analysis (RTA) through a critical realist lens. Participants also completed the Pain Self-Efficacy Questionnaire and Pain Catastrophising Scale. Results: RTA resulted in five themes emerging related to the psychological experience of CH: “Darkness,” “Battling,” “Shifting,” “Control,” and “Despair.” Psychological experiences during the acute attack appeared distinct from experiences of the condition between attacks. The psychological experience was impacted by how long participants had lived with the condition and by whether they had the episodic or chronic form. Individuals living with the chronic form of CH reported increased despair and depression, due to lack of respite from the pain. In contrast, individuals living with episodic CH were less despairing due to pain-free periods but talked to increased uncertainty, with it being unclear when the painful bout would disrupt their life. Conclusion: Living with CH is a complex and challenging psychological experience. Further research to identify how psychological processes may maintain distress and exacerbate pain could help establish a psychological model of CH. Such a model could, in turn, enable exploration of psychological techniques to support individuals during and between CH attacks. Authors also call for research to explore how to increase visibility of CH.

Item Type:	Article
Additional Information:	Data Availability Statement: Full transcriptions are not publicly available to protect participant confidentiality. An example of the coding process for one theme is available upon request to the authors.
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Centres > Mental Health and Social Care (fka Lifespan Health)
Related URLs:	https://onlinelibrary.wiley.com/doi/10.1...
Depositing User:	LivePure Connector
Date Deposited:	14 Nov 2025 15:30
Last Modified:	16 Nov 2025 07:30
URI:	https://ueaeprints.uea.ac.uk/id/eprint/100985
DOI:	10.1155/ijcp/5004925

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