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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 sudden pain erupted behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life 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 family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a