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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed 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 national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties 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 facility.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more 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 calm volunteer guided them through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute therapy 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 cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a