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It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick shocks, like electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort around a single eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a