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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that persists up to three hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky 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 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 the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of 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 sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a