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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation bloomed behind my one eye. Then came quick stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

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

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

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

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible 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. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a