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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder 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 issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, 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 pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are handled with abortive treatment alone. 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 cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a