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It was a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her 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 symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired 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 national guidance need revising to reflect a