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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by rapid shocks, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a