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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. This was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that persists for three hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with occasional attacks are handled with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a