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It began on a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose bizarre remedies for what modern observers 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 superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a