Living With Cluster Headache: A Qualitative Study of Patients’ Perspectives

Palacios‐Ceña, Domingo; Talavera, Blanca; López-Ruiz, Pedro; Gutiérrez-Viedma, Álvaro; Palacios‐Ceña, María; Arias, Jorge-Luis; Fernández‐de‐las‐Peñas, César; Cuadrado, María‐Luz

doi:10.1111/head.12886

Cited by 15 publications

(85 citation statements)

References 29 publications

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“…In a survey (n = 20), cluster headache patients report that they feel most physicians are not very knowledgeable about cluster headache and that people around them, including family and friends, do not understand their illness [92]. Half of the cluster headache patients surveyed said they would not tell an employer about their headaches for fear of losing their job [92].…”

Section: Discussionmentioning

confidence: 99%

“…When women have cluster headaches, onset may be earlier [ 89 , 90 ], and studies suggest that women with cluster headaches are more prone to develop chronic cluster headaches than men [ 91 ]. In a survey ( n = 20), cluster headache patients report that they feel most physicians are not very knowledgeable about cluster headache and that people around them, including family and friends, do not understand their illness [ 92 ]. Half of the cluster headache patients surveyed said they would not tell an employer about their headaches for fear of losing their job [ 92 ].…”

Section: Discussionmentioning

confidence: 99%

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Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review

et al. 2020

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Cluster headache is a rare form of headache associated with sleep and even speculated to be a manifestation of a sleep disorder rather than a primary headache. Cluster headache exhibits both circadian and circannual rhythmicity. While attacks often occur during sleep, the implication that cluster headaches might be involved with rapid eye movement (REM) sleep phases has neither been fully established nor refuted. The regulatory mechanisms governing sleep including hypothalamic activity and the autonomic nervous system response may play a role. Hypothalamic activation has been observed in cluster headache patients during positron emission tomography testing, but only during attacks. While sleep apnea is associated with morning headaches in general, the link between sleep-disordered respiration and cluster headache remains elusive. Hypoarousal during sleep and periods of hypoxia are associated with cluster headache, the latter likely involving inflammatory processes rather than apnea. Further study is needed, as cluster headaches represent a serious primary cephalgia that is incompletely understood.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review

et al. 2020

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“…CH is diagnosed according to the International Classification of Headache Disorders (3rd edn) (2) and is classified as episodic or chronic depending on the duration of the attack-free periods separating the bouts. Patients report decreased quality of life and severe limitations in their ability to function (3,4). The impact is substantial for the 20–30% of patients that are non-responsive to currently available medications (5) and developing novel treatments for CH remains a challenge as the pathophysiology is incompletely understood (6).…”

Section: Introductionmentioning

confidence: 99%

Genetics of cluster headache

et al. 2019

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Background Cluster headache is the most severe primary headache disorder. A genetic basis has long been suggested by family and twin studies; however, little is understood about the genetic variants that contribute to cluster headache susceptibility. Methods We conducted a literature search of the MEDLINE database using the PubMed search engine to identify all human genetic studies for cluster headache. In this article we provide a review of those genetic studies, along with an overview of the pathophysiology of cluster headache and a brief review of migraine genetics, which have both been significant drivers of cluster headache candidate gene selection. Results The investigation of cluster headache genetic etiology has been dominated by candidate gene studies. Candidate selection has largely been driven by the pathophysiology, such as the striking rhythmic nature of the attacks, which spurred close examination of the circadian rhythm genes CLOCK and HCRTR2. More recently, unbiased genetic approaches such as genome-wide association studies (GWAS) have yielded new genetic avenues of interest including ADCYAP1R1 and MME. Conclusions The majority of candidate genes studied for cluster headache suffer from poor reproducibility. Broader genetic interrogation through larger unbiased GWAS, exome, and whole genome studies may provide more robust candidates, and in turn provide a clearer understanding of the causes of cluster headache.

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“…Some patients face difficulties obtaining a prescription for oxygen, paying for it, and/or using it effectively . Challenges in acquiring appropriate medical treatment is one of the many struggles endured by patients with cluster headache, which span personal, social, and economic domains . Improved understanding, acceptance, and availability of inhaled oxygen will serve to better the lives of those with cluster headache and may further inform healthcare practice and policy related to the role of oxygen therapy for the acute treatment of cluster headache.…”

Section: Introductionmentioning

confidence: 99%

Survey Analysis of the Use, Effectiveness, and Patient‐Reported Tolerability of Inhaled Oxygen Compared With Injectable Sumatriptan for the Acute Treatment of Cluster Headache

Schindler

Wright²,

Weil³

et al. 2018

Headache

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Therapeutic response to inhaled oxygen at sufficiently high flow rates (>10 L/min) had comparable efficacy to that of injectable sumatriptan for the acute treatment of cluster headache. Other factors in oxygen delivery (ie, flow rate changes) should be explored for optimization of therapy. The reasons for improved oxygen response in males and those with a cigarette smoking history require further exploration. While both oxygen and sumatriptan can be effective in the management of cluster headache, patient-reported side effects and concerns were more commonly directed at triptan medications. Current restrictions on access to inhaled oxygen, which exist at many levels, limit the therapeutic options available for patients with cluster headache, thereby doing a disservice to this patient population and the providers who deliver their care.

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Living With Cluster Headache: A Qualitative Study of Patients’ Perspectives

Abstract: Qualitative research offers insight into the way CH patients experience their disease, and may be helpful in establishing a fruitful relationship with these patients.

Cited by 15 publications

References 29 publications

Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review

Exploring the Connection Between Sleep and Cluster Headache: A Narrative Review

Genetics of cluster headache

Survey Analysis of the Use, Effectiveness, and Patient‐Reported Tolerability of Inhaled Oxygen Compared With Injectable Sumatriptan for the Acute Treatment of Cluster Headache

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