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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan daily activities 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 looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the condition explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published 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 reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. 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 awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more severe 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 cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a