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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around one eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the pain 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 figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She particularly hated 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 incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers 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 first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published 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 discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need updating to reflect a