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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. It was followed by quick shocks, like lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks usually begin with sudden, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up 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 diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

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

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a