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It was a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose 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.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a