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It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, like electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe agony around 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 red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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

Historical medical records propose bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled 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 she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a