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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around one eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes 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 condition worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. 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 office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a