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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches 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 brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute therapy only. Longer or more severe periods 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 area of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a