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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort around a single eye that persists up to several hours.

About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. 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 worsened through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms 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 described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing 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, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a