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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. This was followed by quick shocks, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently 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 pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

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

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode 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 charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a