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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed 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 school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support 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 moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate 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 dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a