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It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor 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 several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly hated 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 recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across 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 evil entity who afflicted his sufferers' heads.

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

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified 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 tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a