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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid shocks, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that persists up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support 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 office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly disliked 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 most severe episodes. “It steals from you of the simple 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 documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge 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 symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate 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 recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a