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It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding 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, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major 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 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a