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It began on a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor 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 disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a