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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with sudden, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable 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 family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of 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 believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

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 20s, she had her molars extracted because dentists misinterpreted her pain. 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 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a