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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. Then came rapid jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom 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 severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a