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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell 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 a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father 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 absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical records propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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 severe headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a