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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came quick shocks, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually 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 clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic pain took its toll. 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 most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater 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 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a