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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around a single eye that persists up to several hours.

About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate 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 documented across the ages. “The earliest description 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 attacked his victims' heads.

Ancient healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks 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 helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a