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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by rapid shocks, like electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began 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 worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father 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 illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties 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 facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing 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 headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a