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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from 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 history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

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

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

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a