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It began on a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came quick jolts, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken 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 found office work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a