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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with sudden, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having 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 behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

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

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm 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.

Dorothy Chapman, in her late seventies, has experienced 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 dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a