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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, 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 robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode 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 experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated 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 complaints.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose 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 apparently helps manage the bouts of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a