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It was a overcast weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my right eye. It was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. 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 clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms 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 facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a