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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. 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 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 recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, 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 multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a