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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an annual 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-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed 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 hospital.

Still, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented 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 entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient 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 redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a