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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the pain eased 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 took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support 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 moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic attacks 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 looked after by her family 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 remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, 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.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a