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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Attacks usually start with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, 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 behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small 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 across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, 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 pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

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

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a