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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession 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 advisor talked them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a