Key takeaways:
- Roughly one in 1,000 individuals have cluster complications.
- Cluster complications are nicknamed “suicide complications” due to their severity.
- Findings could inform academic supplies for physicians and sufferers.
MINNEAPOLIS — Therapy wants fluctuate amongst sufferers with cluster headache, in line with a poster offered on the American Headache Society 67th Annual Scientific Assembly.
“Cluster headache is taken into account probably the most extreme and disabling headache dysfunction,” Lindsay Frerichs, MD, a headache specialist at Barrow Neurologic Institute in Arizona, informed Healio.
Information derived from Ehrlich A, et al. Understanding the wants of cluster headache sufferers. Introduced at: American Headache Society 67th Annual Assembly; June 19-22, 2025; Minneapolis.
With durations that final between half-hour and three hours, cluster headache is taken into account probably the most painful sort of headache. It’s extra frequent amongst males than girls however a lot much less frequent than migraine, affecting roughly one in 1,000 individuals. Restricted training and remedy can be found on the situation, particularly in comparison with migraine, Frerichs mentioned.
Lindsay Frerichs
“A part of our challenge, by way of the Rising Leaders Program, by way of the American Headache Society, was to do a wants evaluation for this inhabitants, as a result of they’re a lot much less represented,” she mentioned.
The researchers assembled a 10-question on-line survey for sufferers identified with cluster headache promoted by way of Clusterbusters, a headache advocacy group, and the American Migraine Basis in addition to through X.
Questions requested about variety of assaults per yr, time to analysis, the specialty of the clinician who offered the analysis, how cluster headache has impacted the respondent’s psychological well being, and demographics.
The 1,091 respondents (560 males, 371 girls) included 954 who accomplished 60% or extra of the survey; 328 with power cluster headache (53% male) and 603 with episodic cluster headache (64% male); 616 respondents have been based mostly in the USA with 328 from exterior the U.S.
Frerichs famous that earlier literature has indicated a 3:1 ratio of male to feminine sufferers, however she and her colleagues discovered a ratio of 1.5:1. Equally, sufferers with power cluster headache have accounted for 15% to twenty% of populations in earlier literature, however the inhabitants of this research included 36% with power cluster headache.
“That might probably be because of the Clusterbusters group that we utilized to distribute the survey,” she mentioned. “They have an inclination to have extra power individuals in that group.”
Respondents reported time to analysis, with a rating of 1 indicating 0 to six months; 2 indicating 6 to 12 months; 3 indicating 12 months to 2 years; 4 indicating 2 to five years; and 5 indicating 5 years or extra. Median scores included 3.23 for sufferers with power cluster headache and three.51 for sufferers with episodic cluster headache (P = .009).
The researchers additionally assigned level values to diagnosing clinicians, together with 1 for major care, 2 for dentists, 3 for ENT, 4 for basic neurology and 5 for headache specialists. Median scores included 3.79 for sufferers with power cluster headache and three.58 for sufferers with episodic cluster headache (P = .02). Additionally, medians included 3.57 for males and three.78 for ladies (P = .01).
“These with episodic cluster headache truly reported an extended time to analysis than the power group, and despite the fact that it took longer to get a analysis, the individual that made the analysis was much less specialised,” Frerichs mentioned. “That’s fascinating.”
Scores for variety of clinicians seen earlier than analysis included 1 for one or two clinicians; 2 for 3 to 5 clinicians; 3 for six to 9 clinicians; and 4 for greater than 10 clinicians. Medians included 1.76 for males and a couple of.02 for ladies (P < .001), along with 1.81 for these within the U.S. and 1.97 for these exterior the U.S. (P = .03).
“Girls noticed extra clinicians earlier than they bought identified, and so they noticed somebody extra specialised in headache drugs by the point they have been identified,” Frerichs mentioned.
Level values have been assigned to the usage of unprescribed or unapproved remedies as nicely, together with 1 for by no means, 2 for sometimes, 3 for typically, 4 for fairly often and 5 for all the time. Median scores included 2.78 for sufferers with power cluster headache and a couple of.57 for sufferers with episodic cluster headache (P = .03), together with 2.56 for these within the U.S. and a couple of.79 for these exterior the U.S. (P = .01).
Frerichs famous that remedy is dependent upon the length of the assault cycle.
“Some individuals solely make the most of acute remedies like injectable sumatriptan or oxygen,” she mentioned. “If their cluster cycle lasts longer, they is perhaps on preventive (care) in the course of the assault, like verapamil or galcanezumab.”
have tried a number of medicines, Frerichs added.
“They’re typically going to extra second, third line therapies,” she mentioned.
Moreover, respondents rated perceived understanding of their cluster complications by others, with 1 indicating no understanding, 2 indicating some understanding and three indicating understanding. Medians included 1.41 for males and 1.26 for ladies (P < .001).
“Everybody felt just like the cluster affected their psychological well being,” Frerichs mentioned. “Feminine respondents, these with power cluster, and people dwelling exterior the U.S., reported extra psychological well being points than the opposite teams.”
The commonest psychological well being points reported within the survey included anxiousness, despair and suicidal ideation, Frerichs mentioned, including that cluster complications typically are nicknamed “suicide complications.”
“Its nickname, within the literature, is a suicide headache as a result of it’s so extreme, individuals have suicidal ideation with it,” she mentioned.
Proportions of respondents reporting psychological well being points included 82.7% of the power group and 71.1% of the episodic group (P < .001); 80.5% of ladies and 71.3% of males (P = .002); and 79% of these exterior the U.S. and 72.9% of these within the U.S. (P = .04). Respondents reporting entry to psychological well being care included 76.7% of these within the U.S. and 53.4% of these exterior the U.S. (P < .001).
These variations between sufferers with cluster headache could inform analysis, remedy and academic supplies that meet the person wants that respondents described within the survey, Frerichs mentioned.
“The largest takeaway is that girls are taking longer to obtain a analysis,” Frerichs mentioned. “That may very well be as a result of they’re getting misdiagnosed with migraine and never cluster.”
Frerichs suggested clinicians to maintain this distinction in thoughts when attempting to find out between migraine and cluster in a analysis, specializing in the untreated length of the assault and if they’ve the autonomic options suggestive of cluster headache, which embody teary eye, droopy eyelids and stuffy nostril on one facet of the pinnacle.
“That helps differentiate migraine from cluster,” she mentioned. “The following step is working with the Clusterbusters and American Migraine Basis to make academic instruments particularly for clinicians and likewise academic instruments for sufferers.”
For extra info:
Lindsay Frerichs, MD, will be reached at Lindsay.frerichs@commonspirit.org.
