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It was a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe pain behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired 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 decreases nerve activity.

The national guidance need updating to reflect a