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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid stabs, like electric shocks. As the school day progressed, the discomfort eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family 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 remembers obtaining 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 account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a