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It began on a overcast Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. 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 around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began 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 childhood. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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

Ancient medical records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a