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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my right eye. Then came rapid jolts, like electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort around a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many 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 mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a