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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks typically start with abrupt, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked 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 steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity 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, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a