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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. This was followed by rapid shocks, like electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European 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 happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. 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 pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a