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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically start with abrupt, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, 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 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 described throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a