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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 class, when a sudden pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, 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, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began 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 symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are handled with acute therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a