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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain behind a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis 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 described throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, 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, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a