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It began on a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around a single eye that persists for several hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, 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 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 attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a