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It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain behind one eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family 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 episode inside a facility.

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

Ancient medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, 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, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a