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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid stabs, similar to electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

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 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a