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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. Then came quick jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable 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 recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

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

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are managed with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a