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It was a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl 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 adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, 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 liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a