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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind a single eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of 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 attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a