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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort behind a single eye that persists for three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk cures.

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

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in treating the disorder note this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more education. 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 calm advisor guided me through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a