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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that persists for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts 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. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value 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 the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, 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 molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a