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It was a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically start with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, 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 dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. 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 classified by global 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 that delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a