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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, like electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, 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 recovered.

In spite of such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a