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It was a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that lasts up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, 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 condition deteriorated through her youth. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain 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 looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across 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 malevolent spirit who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a