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It began on a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally 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 office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for 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 remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a