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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain around a single eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value 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 documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

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

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more intense periods 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 head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a