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It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

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

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a