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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over 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 attacks returned repeatedly that fall, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single 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 associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

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

In 1998, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a