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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around one eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She especially 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 incapacitation 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 recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling 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 symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode 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 greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a