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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. Then came rapid jolts, like electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked 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 most severe episodes. “It robs you of the small 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 facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a