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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize life around erratic attacks took its toll. She especially 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 paralysis caused by the worst episodes. “It robs you of the simple 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 across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 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 teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a