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It was a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked 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 most severe 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 across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. 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 formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a major 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 felt better.

Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a