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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that persists for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties 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 across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. 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 discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a