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It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, 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 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 first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a