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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically start with abrupt, severe pain focused on a single 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, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a