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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. This was followed by quick stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Historical medical records suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a