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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by rapid jolts, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually 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 lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a