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It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid stabs, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly 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 incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition 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 teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a