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It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came quick stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis 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 portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined 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 pain is that reduces nerve signals.

The national guidelines need revising to reflect a