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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid jolts, like electric shocks. As the school day progressed, the discomfort eased 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 cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began 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 worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from 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 attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming the disorder. 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 characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, 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 molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a