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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked 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 paralysis caused by the worst episodes. “It robs 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 facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent experts in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority 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 pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a