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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind one eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional 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 episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent 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 felt better.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, 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 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired 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 reduces nerve activity.

The national guidance need revising to reflect a