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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a