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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with greater intensity. 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 took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid 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.

Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are handled with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a