Abstract
A migraine is more than head pain, and chronic migraine can dramatically impact a person and those around her/him/them. To better understand those effects it is important to study the experiences of persons with migraine and their caregivers, family, friends, and health and mental health providers. When they collaborate, stakeholders may improve outcomes for persons with chronic migraine. One type of stakeholder cooperation is Health Co-Inquiry, involving a person-centered approach, activation of persons toward collaboration and improved health, evidence-based practice, and integrated care. The current study investigated Health Co-Inquiry at online forums, blogs, and bulletin boards where people came together to discuss migraine. A "Bifurcated Method" was used to conduct inductive, thematic analyses, quantitize themes, and cross-check themes using a robot program, which crawled the Internet to gather data about stakeholder sites and posts related to migraine. Key themes in the online narratives of migraine stakeholders included seeking and providing advice, help, and information. In addition, giving personal stories and testimonials, selling computer applications and products, and providing misinformation were frequent. Differences in the types of posts by various stakeholder groups were identified and may inform researchers about their varied perspectives and goals. Remarkably, migraine is still migraine-before a pandemic and during it. As such, migraineur concerns remained stable across thematic analyses of blog and forum posts before and during the worldwide COVID-19 pandemic.
Highlights
A migraine is much more than head pain; it can be accompanied by vertigo, nausea, vomiting, and other symptoms [1, 2]
The Bifurcated Method [7] that was adapted here for the study of migraine, indicates that migraine is a significant challenge for people who experience it
Our pre-COVID-19 January-2018 data are consistent with those reported by Seifert et al in 2019 with “migraine”, “pain”, “ache”, and “ill” as the highest frequency terms in online posts [7]
Summary
A migraine is much more than head pain; it can be accompanied by vertigo, nausea, vomiting, and other symptoms [1, 2]. Hypersensitivity to sensory stimuli in multiple domains (e.g., visual, auditory) is common, and it may persist during inter-ictal intervals, suggesting anomalies in multisensory integration [3]. The pain of migraine can be excruciating, and the level of disability may be high (e.g., moderate to severe) [4, 5]. The World Health Organization (WHO) has labeled migraine among the top 20 disabling conditions, acknowledging the strain.
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