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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the pain eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

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

Still, the failure to organize life around erratic attacks took its effect. She especially 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 most severe episodes. “It robs you of the simple liberties we don't appreciate 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 documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. 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 calm advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a