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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with greater 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 tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” 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 hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a