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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers released 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 prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from 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 pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 decreases nerve signals.

The official guidance need revising to reflect a