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It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches typically start with sudden, severe pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly hated 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 paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

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

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a