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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published 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.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidance on management advise 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 attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a