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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. 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. Prominent specialists in treating the condition explain this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published 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 deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more 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 calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a