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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks usually begin with abrupt, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value 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 documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, 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.

Despite such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. 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 certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication 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 people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a