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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are handled with acute treatment only. 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 procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a