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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis 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 obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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

Historical medical texts propose bizarre treatments for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 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 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a