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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain sprang behind my one eye. Then came quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. 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 worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? 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 A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority 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 extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a