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It was a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming 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 commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort around one eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for up to 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 perspiration. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “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 episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, 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 progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most 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 misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a