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It began on a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around a single eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

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

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, 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 felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a