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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often affected. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After having 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 behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer 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 treatment and medication until the attack passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a