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It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid stabs, like electric shocks. As the school day progressed, the pain eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around one eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain around a single 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, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around erratic pain took its effect. She especially hated 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 incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate 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 described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's attacks started 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 finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, 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 molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a