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It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick shocks, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain around one eye that persists up to several hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities 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 looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple 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 described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a