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It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks 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 worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a