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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense pain around one eye that persists for three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate 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, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured 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 recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. 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 talked me through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a