It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that persists up to several hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended pain-free periods.
What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.
One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.
Still, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading experts in diagnosing the disorder note this.
In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
Despite such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.
Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.
Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.
Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known people.
But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
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