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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my right eye. Then came quick shocks, like electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly hated 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 paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many 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 guidance need revising to reflect a