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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind one eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, 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 fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a