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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. Then came quick stabs, like electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

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

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European 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 international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a