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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a