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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain behind a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support finally 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 office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a