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It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came rapid stabs, like electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort behind a single eye that persists for several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated 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 worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, 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, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a