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It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain erupted behind my right eye. It was followed by quick stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking 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. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a