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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, 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 bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky 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, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing 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 precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a