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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around one eye that persists up to several hours.

About one in 1,000 individuals suffer by the condition, and males are more often affected. Attacks usually start with sudden, excruciating pain around one eye that peaks within a short time 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 face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing 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 primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches 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 pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a