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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated 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 paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical 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 cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a