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It was a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation 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 across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

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

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a