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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. Then came rapid shocks, like electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically begin with sudden, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account 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 attacked his sufferers' heads.

Historical healing texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as verapamil, 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 decreases nerve signals.

The national guidance need revising to reflect a