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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with abrupt, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple 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 across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes 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 reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics 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.

A charity trustee, 78, has suffered from cluster headaches for the majority 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 dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a