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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation sprang behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort around one eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic 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 found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing 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 conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a