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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky 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 definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the results 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 journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a