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It was a dreary weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that persists for three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs 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 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 experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. 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 early 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of 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 activity.

The official guidelines need revising to reflect a