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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around one eye that lasts up to three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

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

Val Hobbs, 74, a chronic sufferer 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 a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. 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 office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms 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 described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a