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It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Attacks typically start with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, 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 national hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly 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 steals from you of the simple freedoms 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 throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading experts in treating the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a