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It was a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that lasts for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically start with sudden, severe 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 associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a