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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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

Ancient medical records suggest unusual remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

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

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a