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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind a single eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a