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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe agony focused on a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some experts would classify as a migraine. 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 comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris'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 diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant neurologists believe the official guidelines 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 bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a