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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a