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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day progressed, the discomfort 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 agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind one eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes 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 deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple 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 portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man'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 had four operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional attacks are managed with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a