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It began on a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% 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, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from 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 facility.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a