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It was a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a