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It began on a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more 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 commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable pain 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 paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 first 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 evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a