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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around one eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks 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 symptoms deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe 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 attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a