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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small 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 documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

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

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a