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It was a dreary weekday in the morning in September 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 jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months 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 the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort around one eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Attacks typically begin with sudden, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

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

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a