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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around one eye that peaks within minutes and lasts 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 sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, 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 steals from you of the small liberties we don't value 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 described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading experts in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, 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 teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a