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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort behind one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its toll. She particularly hated 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 worst episodes. “It robs you of the simple liberties 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 first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a