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It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my right eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate 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 documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a