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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort around a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most 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 dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a