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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, similar to electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers 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 first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

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

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

National guidance on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a