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It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind a single eye that lasts up to three hours.

About one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, 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 condition worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family 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 remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity 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 advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a