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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, severe agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, 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 family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a