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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 one eye. It was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Attacks typically start with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties 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 facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of 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 official guidelines need updating to reflect a