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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came quick jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially 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 recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. 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 disorder note this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a