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It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a