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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my one eye. Then came quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a