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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. Then came quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated 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 worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining 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 first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are managed with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a