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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

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

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a