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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over 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 returned frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a