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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “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 her youth. Drinking in her adolescence, like several causes, made things worse. 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 episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

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

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

In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, 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. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a