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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Four 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 ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around a single eye that persists for several hours.

About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, 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 episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding 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 diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties 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 facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. 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 specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a