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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.

Official guidance on management 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 choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a