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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind a single eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes 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 moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description 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 specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks 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 sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense bouts 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 area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a