Cluster headaches, sometimes called “suicidal headaches”, have been described as a male-dominated disease. New research from the Karolinska Institutet in Sweden now shows that women with the condition are more affected in their daily lives. They have longer periods of pain, a higher frequency of associated symptoms, use more prophylactic drugs, and take more sick leave. The results are published in two studies in the journal Neurology, the medical journal of the American Academy of Neurology.
Cluster headache is still often misdiagnosed initially in women, perhaps because some aspects may be similar to migraine. It is important for doctors to be aware of how the disorder manifests differently in men and women so that the most effective treatment can be given as quickly as possible. »
Andrea Carmine Belin, Study Author, Associate Professor, Department of Neuroscience, Karolinska Institutet
It is about three to five times more common for men to be diagnosed with cluster headache than women. Because the differences were once even greater, the condition was widely considered a male-dominated disease.
The disease affects around one in a thousand people and is characterized by episodes of extremely painful headaches that last between 15 minutes and three hours and occur up to eight times a day. The cause of the disease is unknown, but as the attacks tend to follow circadian and annual rhythms, peaking at night and in the fall and spring, there is speculation that our internal biological clock affects the course of the disease.
Researchers from Karolinska Institutet now show that women often tend to suffer from the most severe variant of the disease, meaning they have less than three symptom-free months a year – a condition known as chronic headache in clusters.
“Both men and women report the same level of pain, but since women’s periods of pain tend to last longer, their daily life is also more impacted,” explains Andrea Carmine Belin.
In one of the studies, researchers found that of the 874 participants, twice as many women had the chronic variant of the disease as men (18% versus 9%). All participants had been diagnosed with a cluster headache by neurologists at clinics in Sweden between 2014 and 2020 and were also asked to complete a detailed questionnaire about lifestyle, symptoms and treatment.
More women used prophylactic drugs than men (60% vs. 48%) and reported a higher frequency of associated symptoms such as droopy eyelids, also known as ptosis (61% vs. 47%) and restlessness (54% against 46%). ). Women had slightly more nocturnal seizures and reported sleep disturbances more frequently. It was also twice as common for women to have a parent with cluster headaches (15% versus 7%).
“It’s hard to say what’s causing these differences, but what we’re seeing is that women who are diagnosed with cluster headaches tend to have a more severe variant of the disease and it’s time to stop thinking of cluster headache as being male-dominated. says Caroline Ran, research specialist in the Department of Neuroscience at Karolinska Institutet.
The other study shows that patients with cluster headaches often have other diagnoses, and that here too, women are overrepresented. 96% of women among the 3,240 patients with cluster headache residing in Sweden in 2010 had at least one other diagnosis, compared to 90% of men. In a matched control group of 16,200 people, multimorbidity was found in 78% of the reference group. Women also took more sick days and were more likely to retire early.
“What is striking is that almost all women with cluster headaches have comorbidity, which reinforces the idea that these women are in severe pain,” says Christina Sjöstrand, assistant lecturer at the same department. . “It is reasonable to assume that this affects their ability to work and it is important for the good of the individual and society that they receive help in the form of acute and prophylactic treatment, monitoring and support. »
Cluster headache research will continue in part at the newly established Center for Cluster Headaches at the Karolinska Institutet, led by the research team of Andrea Carmine Belin.
The study was funded by the Swedish Brain Foundation, Mellby Gård Foundation, Swedish Research Council, Region of Stockholm, Karolinska Institutet research funds and Märta Lundkvist stiftelse.