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It began on a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort around one eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “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, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to organize 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 steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a