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It began on a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. It was followed by quick shocks, like lightning bolts. As each class came and went, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain behind a single eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially 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 simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed 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 circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man'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 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a