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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased force. 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 agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues 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 face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started 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 childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate 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 attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. 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 children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, 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.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a