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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by quick jolts, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity 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, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted 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 part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a