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It was a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that patients 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 verapamil, which apparently soothes the attacks of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are managed with acute therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a