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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks typically start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a