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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate 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 originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a