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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, 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 small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent 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 advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. 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 education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a