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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain behind one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs 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 attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled 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 responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

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

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with acute therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a