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It was a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life 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 looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured 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 recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority 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 misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a