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It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from 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 portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. 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 certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a