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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind one eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, 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 attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what some observers 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 folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidance on management 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 choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a