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It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked 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 worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed 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 fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, 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 reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a