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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain around a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing texts propose unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical 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 key blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a