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It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by quick stabs, like electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured 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 recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a