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It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind one eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis 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 remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of 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 life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a