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It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around a single eye that persists up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually start with sudden, severe pain around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of 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 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite 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 sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a