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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

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 anticipate the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific 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 thought to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge 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 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 multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a