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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Attacks usually begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “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 childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties 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 described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

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

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific 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 leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidance need updating to reflect a