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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. Then came rapid jolts, similar to electric shocks. As the school day progressed, the discomfort 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 douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, 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: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain around one eye that peaks within minutes and lasts for as long as 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 perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a