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It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by rapid stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes started 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 condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description 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 officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a