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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a