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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my one eye. It was followed by rapid jolts, like electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around a single eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks 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 symptoms worsened through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international headache committees 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 artery that delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more intense periods 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 area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a