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It was a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind one eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. 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 suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a