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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind a single eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for 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 obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a