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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around a single eye that lasts for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding 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 episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small 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 documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a