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It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms 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 portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European 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 occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a