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It was a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several 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 chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 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, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She especially 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 most severe 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 attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first 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 evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a