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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially disliked 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 most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed 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 certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a