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It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around a single eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks usually start with sudden, severe pain focused on one eye that peaks within minutes and continues 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 face sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured 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 recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a