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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe pain around one 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 accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, 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 hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a