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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden pain bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken 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 office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly disliked 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 incapacitation caused by the worst episodes. “It robs 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 across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive 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 fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, scientists published the findings 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 medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a