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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came rapid jolts, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. 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 migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment 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. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a