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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic attacks 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 family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties 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 facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

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 extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a