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It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. It was followed by quick stabs, like electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around one eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after 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 obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. 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 activity.

The official guidelines need updating to reflect a