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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches 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 circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable 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 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a