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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

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

Still, the inability to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Leading specialists in treating the condition explain this.

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

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a