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It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties 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 documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes 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 progress, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a