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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. Then came quick stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. 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 organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after 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 remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published 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, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are managed with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a