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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major 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 recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition 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 dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a