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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind one eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst 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 portable toilet.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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 severe headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists 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 attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her 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 symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a