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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. 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 found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked 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 incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

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

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

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. 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 drugs until the episode passed.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a