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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, similar to lightning bolts. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around one eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, 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 absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls 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 description 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 malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

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

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a