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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks typically start with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to 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 family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition 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 molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a