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It was a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came rapid shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain around one eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “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, like several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst 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 significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a