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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly 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 predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a