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It was a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. It was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms 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 across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a