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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort around one eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate 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.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a