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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, like electric shocks. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated 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 simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack 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 antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. 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 reduces nerve signals.

The national guidelines need revising to reflect a