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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks usually start with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “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 fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls 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 earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a