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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently 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 mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe pain around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky 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, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic 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 most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading neurologists argue the guidance 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 bout determines the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a