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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic 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 simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a