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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak 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, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster headache. 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 formally recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, scientists published the findings 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 major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a