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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by quick stabs, like electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published 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 pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are handled with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a