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It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually 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 hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, 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 value 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 described throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose 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 therapies.

A charity trustee, in her late seventies, 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 molars pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed with acute therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a