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It was a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks usually start with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, 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 interpreted her episodes as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office 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 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She especially disliked being unable to plan social events, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts propose unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, 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 discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 molars extracted because dentists misunderstood her pain. She believes 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 helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen 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 individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a