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It began on a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. It was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s 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 outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity 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 advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer 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 bouts with infrequent attacks are managed with abortive treatment 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 nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a