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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came rapid shocks, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple 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 facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

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

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

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 molars pulled because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a