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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of 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 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a