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It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a