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It began on a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. It was followed by rapid jolts, like lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with abrupt, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists 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, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks dentists 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 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of 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 national guidance need updating to reflect a