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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around one eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that peaks 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 tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially hated 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 incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by global medical societies 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 brain. Prominent experts in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a