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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 class, when a intense pain bloomed behind my right eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified 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 major blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority 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 misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a