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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around one eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars 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 responded. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive therapy alone. Longer or more intense 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 side of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a