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It began on a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick shocks, similar to electric shocks. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

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

This condition often begin with severe discomfort around one eye that persists for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records propose bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough 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 characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a