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It began on a overcast Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in 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 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain around one eye that lasts up to several hours.

About one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. 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 activity.

The official guidelines need updating to reflect a