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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. 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 found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent 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 the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a