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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, 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 dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers 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 earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a