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It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists for three hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms 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 facility.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the disorder 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 attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a