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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort around a single eye that lasts for three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, 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 recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

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

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a