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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my right eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts up to several hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

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

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. 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 calm volunteer talked them through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a