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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office 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 national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky 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 value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global headache 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 blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult 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 pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a