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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain around one eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with abortive treatment alone. Longer or more severe periods 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 area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a