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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. It was followed by quick jolts, like electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that persists for several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office 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 specialist neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from 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 documented across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent 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 recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify 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, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes 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 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a