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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small 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 documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major 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 reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis 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 eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, 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 dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. 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 reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a