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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. 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 alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating 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 approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a