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It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came quick shocks, like lightning bolts. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around a single eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “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 time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with acute treatment alone. 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 injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a