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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind one eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a