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It was a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient healing records propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from 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 much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a