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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor 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 triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, 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 attack eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a