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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased 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 pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain around one eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a