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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. It was followed by rapid shocks, like electric shocks. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort behind one eye that lasts for three hours.

About 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls 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 description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a