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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children 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 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 the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent 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 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 reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more severe bouts 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 discomfort is that reduces nerve activity.

The official guidance need revising to reflect a