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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid stabs, like lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst 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 significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first 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 spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the results 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 a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession 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 bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a