Diagnosis, medication, and surgical management for patients with trigeminal neuralgia: a qualitative study

BACKGROUND: Trigeminal neuralgia (TN) is a serious health problem, causing brief, recurrent episodes of stabbing or burning facial pain, which patients describe as feeling like an electric shock. The consequences of living with the condition are severe. There is currently no cure for TN and management of the condition can be complex, often delayed by misdiagnosis. Patients’ qualitative experiential accounts of TN have not been reported in the literature. Capturing subjective experiences can be used to inform the impact of the condition on quality of life and may contribute to a better understanding of current clinical practice with the aim of improving patient care. METHODS: Participants with TN (n = 16; 11 female), including those who have and have not undergone surgical intervention(s), took part in one of four focus groups. We conducted a thematic analysis within an essentialist framework using transcripts. RESULTS: The impact of TN and treatment on the lives of participants emerged as four predominant themes: (1) diagnosis and support with TN, (2) living in fear of TN pain, (3) isolation and social withdrawal, and (4) medication burden and looking for a cure. Each theme is discussed and illustrated with extracts from the transcripts. CONCLUSIONS: Key issues to address in the management of patients with TN include continued delays in diagnosis, persistent side effects from medication, and a lack of psychological support. Developing strategies to enhance the management of patients with TN, informed by a biopsychosocial approach and multidisciplinary team working, is essential to enhancing the provision of current care.