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It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated 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 bus home.

Her relatives often interpreted her episodes 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 took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable attacks took its effect. 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 family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

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

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a