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It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick shocks, like lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe 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 across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed 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 certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. 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 discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a