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It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that reaches its peak 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 red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing texts 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 including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

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 twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a