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It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically 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 often affected. Attacks usually begin with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a