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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms 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 eventually 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 exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a