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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered 64% 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 Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. 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 hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man'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 multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode 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 she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a