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It was a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She especially hated 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value 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 description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed 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 issue with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with acute therapy only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a