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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain sprang behind my right eye. Then came quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value 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 documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with abortive therapy alone. More prolonged 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 procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a