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It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind a single eye that persists up to three hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a