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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

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

Still, the failure to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs 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 attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, 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 clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a