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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that persists for several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support 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 took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic 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 family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a