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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started 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. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

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

The disorder were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough 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 alcohol? Certain 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 go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches 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 dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a