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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks typically begin with abrupt, excruciating agony around one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally 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 concealed her condition. 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.

Still, the failure 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 family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

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

The disorder were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. 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 observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation 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.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches 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 molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a