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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class 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 begin with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate 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 the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. 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 discomfort is that decreases nerve activity.

The official guidance need revising to reflect a