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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually begin with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable 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 small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what modern observers would describe 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 folk cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short cycles with infrequent episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a