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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort around a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically begin with abrupt, excruciating pain around a single 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 red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. 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 found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

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

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a