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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

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

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a