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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually start with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. 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 family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a