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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain around one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, 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 delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a