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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

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

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

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

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with occasional attacks are managed with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a