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It began on a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that persists up to several hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her father 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 illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

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

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing 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 common head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a