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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came rapid stabs, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “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 childhood. Drinking in her teens, similar to several causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first 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 sufferers' heads.

Historical medical texts suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted 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 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

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

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, 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 precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives 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 area of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a