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It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came rapid jolts, like electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe 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 significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a