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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon forming 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 commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms 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 portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: 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? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a