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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that reaches its peak 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 red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. 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 illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize 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 incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches 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 dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

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

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a