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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable 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 freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing 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 late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a