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It began on a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain behind a single eye that persists for three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks typically start with sudden, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value 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 history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

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 four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a