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It was a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that persists up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

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 flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value 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 documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured 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, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a