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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, like electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that persists up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Cluster headaches usually start with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally 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 clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 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 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a