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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation 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 major concert, only to have an attack 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 antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man'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 multiple surgeries before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a