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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my right eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate 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 time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition 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 molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a