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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around one eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes 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 adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, 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 dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, 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 simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a