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It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties 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 facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

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

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began 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 multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a