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It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical 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 treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, 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 proceeds by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a