“You will eat shoe polish if you think it would help”—Familiar and lesser‐known themes identified from mixed‐methods analysis of a cluster headache survey

Abstract

Objective: To characterize patient-reported ideas and concerns about cluster headache, treatment options, and management strategies. Background: Cluster headache patients experience severe pain and often suffer additional consequences from their disease. Patients have identified methods to cope with and combat cluster headache that are not widely known. Methods: Secondary analysis was performed using deidentified data from the online Clusterbusters Medication Use survey, wherein 10 questions allowed for freely written comments. Using mixed-methods techniques, neurologists with expertise in headache medicine identified themes from these comments. Subgroup analysis sought to identify variables associated with specific themes. Results: Among 2274 free-text responses from 493 adult participants, 23 themes were identified. Themes commonly discussed in the literature included such topics as "nothing worked" (24.7%, 122/493), "side effects" (12.8%, 63/493), and difficulties with "access/cost" (2.4%, 12/493). Less widely recognized themes included the use of "illicit substances" (35.5%, 175/493) and "vitamins/supplements" (12.2%, 60/493) in disease management. Lesser-known themes included "coffee" (5.3%, 26/493) and "exercise/physical activity" (4.7%, 23/493). Using strict significance criteria, no subgroup was associated with any theme. Several poignant quotes highlighted patient thoughts and experiences. Conclusions: This mixed-methods analysis identified challenges endured by cluster headache patients, as well as a variety of patient-directed disease management approaches. The volunteered information spotlights pharmacological, physiological, and psychological aspects of cluster headache that warrant further exploratory and interventional investigation.

Recent advances in the diagnosis and management of cluster headache

“…Attack related restlessness is one of the most distinctive features of cluster headache. During attacks, patients may pace, rock, vocalize, and carry out other various activities, such as push-ups and running 38. At times, patients may carry out self-injurious behaviors; importantly, these are usually unrelated to suicidal ideation (discussed below).…”

“…At times, patients may carry out self-injurious behaviors; importantly, these are usually unrelated to suicidal ideation (discussed below). Hitting or rubbing one’s head, punching the wall, and cutting or piercing the skin are some such self-injurious behaviors carried out during attacks 43839Video 1. shows a striking demonstration of attack related restlessness, as well as reflection on the attack.…”

“…Patients with cluster headache may consume coffee or energy drinks as an acute treatment; both of these contain caffeine, and the second one contains other compounds, such vitamin B 12 and taurine 5142438. Various vitamin regimens are taken by patients for disease prevention, high dose vitamin D (starting at 50 000 IU daily with a maintenance dose of 10 000 IU daily) being one of the more common ones.…”

“…During attacks, patients may pace, rock, vocalize, and carry out other various activities, such as push-ups and running. 38 At times, patients may carry out selfinjurious behaviors; importantly, these are usually unrelated to suicidal ideation (discussed below). Hitting or rubbing one's head, punching the wall, and cutting or piercing the skin are some such selfinjurious behaviors carried out during attacks.…”

Self-Reported Efficacy of Treatments in Cluster Headache: a Systematic Review of Survey Studies

“…Many of the used substances are illicit and have not been clinically studied in the treatment of CH [13][14][15][16][17][18]. The use of these various unconventional treatments by CH patients speaks to the limitations of the available conventional treatments [19] and points towards an urgent need to find better treatment options.…”