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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, 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 family often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a