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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind one eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

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

The disorder were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a