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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, 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 behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She particularly disliked 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 simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a