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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of 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 signals.

The national guidance need updating to reflect a