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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around one eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “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 several causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. 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 pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. Longer 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 discomfort is that reduces nerve signals.

The official guidance need updating to reflect a