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It was a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with intense pain behind one eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually start with sudden, excruciating pain around a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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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 subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published 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 deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a