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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then returned 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 cold water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky 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 small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a