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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid stabs, like electric shocks. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, severe pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst 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 facility.

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Headaches have been described throughout history. “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 evil entity who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a