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It was a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my right eye. This was followed by quick shocks, similar to electric shocks. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started 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 condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She recalls obtaining 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 first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

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

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a