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It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind one eye that lasts up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers 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 first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially 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 artery which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a