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It began on a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom 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 often start with severe pain around one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, 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 colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a