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It was a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: 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 eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell 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 a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like 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 mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She especially hated 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 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 attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a