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It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick jolts, similar to lightning bolts. As each class progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small 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 documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced 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 molars pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a calm volunteer 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 administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a