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It was a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain erupted behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl 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 many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value 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 described 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 linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a