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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day came and went, the pain 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 douse my face with cool water. I took paracetamol, but the agony remained unbearable.

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

Cluster headaches typically begin with severe discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks usually start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began 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 symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. 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 most severe episodes. “It steals from you of the simple 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 portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a