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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. 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 took office work after relocating, but often concealed her illness. She was fired from one job, in part 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 especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning 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 earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing 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 migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. 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 neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a