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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that persists for three hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches typically begin with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, 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 appreciate until they're gone,” she says. She remembers winning tickets for a significant 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 antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a