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It began on a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day 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 long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches 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 circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a