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It began on a dreary Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist 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 one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky 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, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to plan life around unpredictable 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 looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms 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 facility.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches 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 blood vessel that delivers blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a