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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people are affected by the condition, and men are more often affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across 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 disease to an evil entity who afflicted his victims' heads.

Historical medical records propose bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a