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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. This was followed by rapid stabs, like electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding 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 identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts propose bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing 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 common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, 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 support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a