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It began on a overcast weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain around one eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic attacks took its toll. She particularly 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 liberties we don't value 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 throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, 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 felt better.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a