Affiliation:
1. Department of Neurology, University Hospital Zurich, Clinical Neuroscience Centre, 8091 Zurich, Switzerland
2. University of Zurich, 8091 Zurich, Switzerland
Abstract
Many patients with cluster headaches report that their relatives do not understand what they are going through. This qualitative study aimed to collect patients’ recommendations and wishes on how others should respond to those suffering from cluster headaches. We recruited 22 patients with episodic or chronic cluster headaches for this cross-sectional study. They responded to seven questions that assessed the disease’s impact on their relationships with relatives and their wishes for others’ behaviour towards them. Seven recommendations for relatives emerged: (i) withdraw during attacks, (ii) respect post-ictal exhaustion, (iii) do not insist on discussing the disorder, (iv) help the patient to lead a “normal” life, (v) support preserving social contacts, (vi) show being aware of the disease severity, and (vii) expect the disease to take up space in patients’ lives and minds. Two recommendations for the interictal period indicate avoidance, which is considered a negative coping strategy. Conversely, the suggestion to support preserving social contacts might mean confronting the disease, which is likely associated with more favourable outcomes. Still, adhering to all patients’ requests might increase suffering instead of reducing it. Thus, further research is needed to develop strategies suited to improve well-being.
Reference20 articles.
1. Interictal Burden of Cluster Headache: Results of the EUROLIGHT Cluster Headache Project, an Internet-Based, Cross-Sectional Study of People With Cluster Headache;Pohl;Headache J. Head Face Pain,2020
2. Cluster headache and anxiety: Results of the EUROLIGHT cluster headache project—An Internet-based, cross-sectional study of people with cluster headache;Pohl;Clin. Transl. Neurosci.,2020
3. The impact of the disease burden on the quality of life of cluster headache patients;Pohl;Cephalalgia Rep.,2021
4. Cluster Headache and the Comprehension Paradox;Pohl;SN Compr. Clin. Med.,2022
5. Psychological intervention with couples coping with breast cancer: A systematic review;Schulz;Psychol. Health,2013