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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick stabs, like electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start 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 perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes 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 hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation 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 had multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging 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 inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. 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 guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a