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It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid shocks, like electric shocks. As the school day progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate 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 across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a