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It was a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain around one eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man'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 had four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches 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 pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a