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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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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 linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: 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 redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a