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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: 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 diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked 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 incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, 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? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms 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 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a