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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. 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 spoiled,” she says. Her condition worsened through childhood. 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 family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms 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 described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

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 severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists 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 prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack 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 greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a