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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October 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-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. 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 office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as flaky 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 appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more 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 advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a