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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around one eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis 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 major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced 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 molars extracted because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, 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 skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a