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It began on a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 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 looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a