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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind one eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking 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 partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly disliked 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 worst 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 attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

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

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many 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 hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a