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It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that peaks within a short time and lasts 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, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a