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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

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 flaky as a co-worker, 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 freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

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

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

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

In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches 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 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 she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a