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It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in 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 commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, 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 hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding 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 took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a