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It was a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually start with sudden, severe agony focused on one eye that peaks within minutes and lasts 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 sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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

Historical medical texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a