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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis 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 obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent 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 felt better.

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

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a