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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain behind one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a