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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by rapid stabs, like electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition 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 pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a