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It was a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives 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 exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised 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 artery which supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping 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 unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a