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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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

Historical medical records propose bizarre remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a