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It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks 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 condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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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 experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, 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 results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a