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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. 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 paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists up to three hours.

About one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky 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 liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify 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, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a