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It was 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 erupted behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after 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 recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, 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 committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured 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 felt better.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer 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 talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a