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It was a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. 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 children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent 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 reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional episodes are handled with abortive therapy only. Longer or more intense bouts require preventives 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 head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a