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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding 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 clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a