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It was a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “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 propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block 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