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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a