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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe agony around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from 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 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 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most 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 extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a