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It began on a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially 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 most severe episodes. “It robs you of the simple freedoms 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 across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial comprehensive description 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 recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater 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 calm advisor guided them through oxygen treatment and medication until the attack eased.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a