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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed 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 hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties 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 facility.

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

Ancient medical texts suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

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

The disorder were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

National guidance on management recommend 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 some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a