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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick shocks, like electric shocks. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms 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 throughout the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a