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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding 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 definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical medical texts propose unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a