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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind one eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

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

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

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

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder 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 problem with a major artery that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, 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 head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a