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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around a single eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began 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. Drinking in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a