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It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a