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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, 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 mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from 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 symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a